August 2009: At age 44, I had my 4th annual screening mammogram. It is the first time I am called back to have a 2nd diagnostic mammogram.
Despite the fact that my maternal grandmother died at age 50 from breast cancer, I wasn’t worried about breast cancer. I was the healthy one. I ate lots of veggies and I rarely missed a day of exercise. When the radiologist came in to tell me that there was an area of concern and they would like a biopsy, it was as if my dentist had said I would need a root canal. Not fun, but no big deal.
October 2009: Following a stereotactic core needle biopsy, a nurse called me on the phone with the biopsy results. She told me I had DCIS (Ductal Carcinoma in Situ) and I would need to schedule an appointment with a surgeon for a wide excision to remove it. I had never heard of DCIS or a wide excision. A week later, I had my first visit with a breast surgeon. She showed me the pathology report and said, “No, you do NOT have DCIS. What you have is called ADH (Atypical Ductal Hyperplasia)… but I’d like to get a larger sample of tissue to determine if there is in fact any DCIS.”
I still do not know why a nurse would tell me over the phone that I had DCIS when I didn’t??? Looking back, I think this prepared me for what was to come.
January 2010: I waited until after the holidays to schedule a wide excision (surgical biopsy). Again, I didn’t question it. Little did I know then that a wide excision biopsy is really the same as a lumpectomy. I was astonished at how painful and antiquated the pre-surgical “wire localization” was. A wire is pierced through the breast and a mammogram is taken. This is done to guide the surgeon to where the microscopic calcifications are (which cannot be seen with their naked eyes in the operating room.) I thought this was an awful barbaric procedure. The technician couldn’t seem to get it right. 
She kept re-positioning and squashing my breast while trying to get the mammogram image they needed.
A few days after the surgery, upon removing the bandage, I was shocked at the sight of my poor breast! It looked like it had been through a car wreck. And this was just a biopsy!
January 19, 2010: I had my follow up visit with the surgeon’s nurse practitioner who gave me my results and pathology report.
Very matter of factly she said, “You’ve been upstaged to DCIS, which is ‘stage zero’ breast cancer. It is 2.5mm intermediate grade. And although it is considered ‘pre-cancer,’ we treat it as if it is cancer.”
The nurse drew a picture of my treatment options on the back of my pathology report: Partial mastectomy plus 7 weeks of daily radiation (this would give me a 10% chance of recurrence) OR mastectomy (which would reduce my chance of recurrence to 2%.)”
She handed me a pamphlet called “A Woman’s Guide to Breast Cancer Diagnosis and Treatment” and told me I should schedule visits with a radiation oncologist, a medical oncologist, the Cancer Center and I would also need to schedule an MRI. She stapled 5 business cards to a file and handed it to me. She then asked me if I wanted a prescription for Xanax.
“No thank you,” I said, “I’ll stick with yoga, meditation and running.” The reality of this diagnosis and the treatment options given to me did not hit me immediately, but in the weeks to come, I was so anxious that I thought maybe I should have taken that prescription for Xanax (but still glad I didn’t).
That night, I shared the “good news/bad news” with family and friends via email. I explained that the bad news was I had been diagnosed with DCIS, but the good news was that it was “stage 0″ — a “pre-cancer” and treatable with very positive outcomes. My inbox soon filled with an outpouring of love and support from family and friends.
I honor the place in you which the entire universe dwells. I honor the place in you which is of love, of truth, of light, and of peace. When you are in that place in you, and I am in that place in me, we are one. ~ Namaste
The next day, I received a call from my dear friend Adriana who was a nutritionist. With her Colombian accent, she insisted, “No-no-no…. you mustn’t do these invasive treatments. You must come see me immediately.”
Thus began my educational journey into a deep understanding of how the body works. Adriana taught me about detoxification, alkaline and organic foods, supplements and the body’s ability to heal when given the right environment and resources. She talked with me about what cancer is from a cellular perspective and assured me that DCIS was NOT cancer and NOTHING to be in fear of. From her perspective, it was the FEAR that was the worst part of a DCIS diagnosis. Adriana spent hours talking with me. It’s as if an angel appeared. I wasn’t looking for an alternative path, but when Adriana spoke to me about the body-mind-spirit healing connection, I resonated with EVERYTHING she said and I was hungry to learn and live by her wisdom. She gave endless hours to me. She directed me with a new way of eating and thinking. Her words were the calm in the storm. I am beyond grateful for her wisdom, her time and her guiding light. (please see post: An Angel Called Adriana).
My energy now shifted wholeheartedly to Adriana’s detoxification and immune-system building plan. I hadn’t eaten meat in 25 years, but now I eliminated acid-forming foods like sugar, dairy, coffee, alcohol and processed foods. I took supplements specific for immunity building and breast cancer prevention. I put chlorophyll and lemon in my water, drank a blueberry-flax seed-protein breakfast shake and ate mostly raw organic salads with tofu, nuts and beans for lunch and dinner. Adriana said if I did everything she said and put off the MRI for a month, it would be clear. And it was!!!
February 2010: The same day I had an MRI, I also had my first breast thermal image. The thermal image showed “fibrosystic changes” but nothing of concern.
At this time, I also had my primary care doctor order every test imaginable. Well-intentioned friends suggested I get tested for heavy metals, have my hormones tested, check my root canals and remove silver fillings. I saw a Naturopathic Dr., an Integrative MD and a holistic dentist in addition to “healing” sessions with Adriana. Much of this was not covered by insurance, but it was all well worth the costs! I asked the Integrative MD at Scripps, “Why are there no studies being done on people like me?” His answer was, “There’s no money in it. Traditional medicine is not a health-care system — it is a disease management system.”
March 2010: Upon sharing all my healthy results, my friend Jim suggested he, Adriana and I create a Facebook group so others could learn, share and support one another on a path of natural, holistic, integrative health. Donna’s Choice: Global Healing from the Inside Out was born.
I began spending countless hours scouring articles about DCIS on message boards on the internet – in search of anything that could give me support for what I intuitively felt about the aggressive treatment options still being offered to me by my doctors. I found endless stories of women sharing their experiences with traditional treatments, but none like me who were questioning the treatments and wanting to take a “wait and watch” approach. The message boards left me overwhelmed and sad. I felt like a lone ranger bucking the system.
But, the more I searched, the more excited about the latest medical research and articles I found. According to Dr. Christiane Northrup, “Autopsies on healthy women in their 40s who died in car accidents found that fully 40% of these women had evidence of DCIS in their breasts. This is NOT cancer,” says Northrup. “And in the vast majority of women, it will never become cancer. But DCIS is now picked up on at least 15% of the newer digital high-resolution mammograms. And it’s being called stage zero breast cancer and often being over-treated with modalities that have significant side effects such as radiation, surgery, and Tamoxifen. This leads everyone to believe that they “beat breast cancer because they caught it early enough. I’ve said for years that there’s got to be a better way.”
Despite the fact that the wide excision biopsy surgery left a “positive” margin (meaning the DCIS was cut through), I decided to leave it be and do no further treatment. If they couldn’t see it on an MRI and they couldn’t get it the first time, I figured the chances of them cutting me open and finding anything were slim. Thanks to Adriana and wisdom from Dr. Northrup and others, I decided to take the “active surveillance” approach. Even my oncologist told me that she didn’t think I was crazy (off the record) and said that 75-95% of the time they go back in for a re-excision they don’t find anything. Her advice was to follow up with a mammogram every 6 months. At the same time, Adriana was telling me that mammograms are radiation and radiation can cause cancer. More confusion. More investigation.
September 2010: Eight months later, I reluctantly had a mammogram. I felt there was just no other way to monitor my condition. What was I to do? If Adriana had her way, I would never do another mammogram. But I needed to know. My husband needed to know. So I did the mammogram. When I saw my doctor a few days later to discuss the results, she said it did show some calcifications, but there was nothing “suspicious” and I should have another mammogram in 6 months. This felt like a major victory! I blasted my old Bruce Springsteen CD in the car on my way home and sang along with glee!
I felt super healthy, strong and happy. I was in the best shape of my life. Despite the DCIS diagnosis in January, that same year I ran 5 half marathons, climbed Half Dome (see post: Half Dome Hike 2010) and beat my competitive, athletic husband in a “Mud Run.” I basically forgot about the DCIS and spent most of my time helping my mom through a very challenging life-threatening mental health crisis. Little did I realize how much stress I had taken on.
Donna’s Journey Part 2 — 18 Months after DCIS Diagnosis
June 2011: Ten months passed since my last okay mammogram. This time the radiologist was alarmed and told me I needed to have a biopsy. Her report stated “Birads 5 – highly suspicious of malignancy.” There was now two areas of calcifications and they were 4cm apart. The surgeon and oncologist both recommended a core needle biopsy or removing at least the highly suspicious area with a lumpectomy (partial mastectomy). Again, my gut said “no, something isn’t right.” Adriana had said, “if you keep looking, they will keep finding.”
Despite the urgency being impressed upon me to do a biopsy, I felt there was no rush to do anything. Intuitively I felt it was more DCIS. My concern was to do the least harm to my breast while also ensuring that the “suspicious” area was not invasive cancer.
I decided to do nothing until my return from a 5 week summer vacation visiting family in Martha’s Vineyard and Denmark. For the first week of this vacation, I spent endless hours online engrossed in research regarding MRI vs. mammograms and needle biopsy vs. surgical removal (lumpectomy) for DCIS. I also had a phone consultation with my San Diego Naturopathic doctor. She favored the surgical biopsy of the suspicious area only and leave the other area alone.
September 2011: I requested an MRI upon my return from vacation. Although my doctors said MRI was not good at picking up DCIS, I had read several articles and studies that said high grade DCIS was more likely to show up on an MRI. As high grade DCIS is more likely to become invasive, this was my only concern. A constant reminder in the back of my mind was the article quoting Dr. Esserman: “If it doesn’t look like high grade DCIS, we should leave it alone.”
Unfortunately the MRI was rated “Birads 4” – suspicious for malignancy. The “suspicious” area on the MRI was 5mm. The mammogram had shown 2.5 cm of “something suspicious.” Interestingly, the MRI did not pick up the other area of “indefinite” calcifications that showed on the mammogram 4 cm away from the “suspicious” area.
I decided to get a 2nd opinion from another surgeon at UCSD. She said she might be able to salvage my breast with a large lumpectomy, but considering there were two areas with calcifications 4cm apart — and the smaller size of my breasts — a mastectomy plus reconstruction would probably give me a better cosmetic result.
I could not believe mastectomy kept being brought into the conversation.
October 2011: My decision was to skip the core needle biopsy and surgically remove only the one area deemed “highly suspicious.” I’m not sure why they sometimes label it a “partial mastectomy” because this sounds a lot bigger and scarier to the patient than wide excision or lumpectomy, but they are all essentially the same. Maybe they can bill more to insurance???
I hated the fact that I had to do a wire localization procedure for a second time as the first time was pretty brutal. This time I had a different kind of alarming situation. Just before the radiologist was about to insert a needle for the wire placement, he said he was going to place two wires into my breast. I looked over at the screen displaying the image of my breast and saw there were 3 areas marked. I said, “I thought we were only going to take out the ‘suspicious’ area?” He stopped and said he would call the surgeon. Sure enough, she said for him to just do the one area. This is an important reminder to pay attention and make sure to communicate if something seems off!
The wire guide placement was much easier this time and the surgery went well with minimal pain and bruising. The surgeon told me I would have results in 3-4 days, but when I called on day 4, the nurse told me that it wouldn’t be until the following week. Waiting for results is never easy. Finally, one week later, I got a call from the nurse with the pathology results. “Good news,” she said. “No invasive cancer, however, there are two positive margins and we’ll need to get you back in to clean up the margins. This time it’ll be easier – we don’t need to do the wire.”
October 2011: I could not believe I was in this predicament — again! I decided to let the surgeon do a re-excision to try to get “clean” margins. I was led to believe this would be a minor surgery – and by doing it quickly (within two weeks) I could get on with my life and be “done with it.” I was surprised the pain was far more severe when I woke up in recovery. I had not needed any pain meds for the other surgeries. Now I took them.
This time the results came in just a couple of days. The nurse again called me on the phone and said there was “Still one close margin –.01mm…. and they want at least 2mm of healthy tissue around any abnormal cells.” She told me, “Your options now are another re-excision or a mastectomy.”
I hung up the phone totally frustrated and dismayed with the pathetic health-care system I was dealing with. Two back-to-back lumpectomy surgeries and a highly invasive mammogram with a wire stuck through my breast and still they can not get it right! I had put my trust and my body in these doctors hands. But, no more!
My breast looked a lot more disfigured after the 2nd surgery. I was extremely sore from having two surgeries within 3 weeks. What to do now? Again, Dr. Esserman’s words reassured me, “If it doesn’t look like high grade DCIS, we should leave it alone.” I could not imagine having a mastectomy for something that reputable doctors were saying could be safely left alone. For the same reason, I could not imagine having weeks of daily radiation bomb my breast and my body (despite my surgeon’s final plea: “Don’t be stupid Donna — at least do a 3-week short course of radiation.”
I continued to investigate options. I googled “DCIS without radiation” and found Sandie Walters website “DCIS Without Rads” in a comment she left in an online DCIS forum. I felt inspired. I am so grateful to Sandie for creating a website to share her story and resources. Sandie was spared of a mastectomy and radiation as well as unnecessary biopsies thanks to a 2nd opinion from Dr. Lagios, an internationally renowned pathologist and DCIS expert who also introduced her to Dr. Harms who developed unique software and “dedicated breast MRI” called RODEO MRI which helps to make more accurate diagnoses and treatment plans especially for women who may be at increased risk for breast cancer. (see post: 2nd Opinions Matter).
Like Sandie, I pursued a 2nd opinion of my pathology slides from Dr. Lagios. From this consultation I gained peace of mind. (Dr. Lagios gave me permission to post our phone consultation. You can listen to the recording here. He told me the DCIS found in my breast was in fact “low grade.” He calculated my score on the Van Nuys Prognostic Index to be an “8.” He said the local recurrence rate would be 15% at 9-10 years with radiation or 30-35% without radiation. I said, but I have already had a recurrence and it’s only been 1.5 years. He said the present DCIS was “NOT a recurrence, but RESIDUAL DCIS” which was there all along but which was not removed in the very first surgical biopsy in January 2010. So if it was there all along, was it not getting picked up on mammograms and MRIs? More confusion. Dr. Lagios said he wouldn’t recommend doing nothing. In his opinion, I now had 3 options: 1.) possible re-excision to get better margins (with Dr. Melvin Silverstein), 2.) radiation therapy or 3.) skin-sparing mastectomy. He recommended that I do a RODEO MRI in January once I healed, a baseline mammogram in 6 months and visit Dr. Silverstein (who co-developed the Van Nuys Prognostic Index with Dr. Lagios) and is an “oncoplastic surgeon.” Dr Silverstein specializes in lumpectomies with reconstruction so women are not left disfigured by lumpectomies and can avoid mastectomies. My San Diego surgeon had told me she would not do another excision as it would be too deforming. Once again, she was recommending either a mastectomy or radiation. She said I would be a good candidate for a 3 week higher dose daily radiation course and she would feel comfortable if I just did that.
Again, I am grateful for Dr. Esserman’s words which remained in the back of my mind: “If it is not high grade, we should leave it alone.”
November, 2011: I drove from San Diego to Newport Beach and had a consultation with Dr. Silverstein. He proposed a new plan – a surgical procedure that would remove the bottom and outer quadrant of my right breast encompassing the area with the close margin and any residual DCIS & calcifications. He would match the other breast so that they looked perfectly even. He showed me impressive “before/after” photos of deformed breasts made beautiful. He said he needed new images and before I knew it I was being escorted to do a mammogram. I felt very uncomfortable and repeatedly stated that my breast was still quite sore from having two surgeries over the last month. I asked about RODEO MRI and Dr. Silverstein said it wouldn’t show him what he needed. Thankfully the technician listened and I did NOT do a mammogram on my very sore and tender breast. I was in no rush to do anything. I was there to gather information. The nurse brought me back to Dr. Silverstein’s exam room and he said, “Let’s wait till January when you are feeling better.”
While making my follow up appointment, I realized I had not asked an important question: If we did get clear margins, could I safely avoid radiation? Dr. Silverstein’s assistant called me back and said there is no guarantee of getting clear margins and they usually do recommend radiation. I said I was getting conflicting information and that Dr. Lagios was recommending I get a RODEO MRI in January as this type of MRI can be even more specific than mammogram and regular MRIs at picking up DCIS. She said, to be honest with you, “I have never heard of a RODEO MRI.” I told her to google it.
I also had a 2nd surgical opinion consultation with Dr Anne Wallace, director of UC San Diego Health’s Comprehensive Breast Health Center. She said she didn’t know if another lumpectomy was possible…. that it would be too deforming… Mastectomy is probably best.
December, 2011: My decision…
NO FURTHER TREATMENT.
I spend my days developing DCIS 411.
Donna’s Journey Part 3 continues…
- February 2012 — I flew from San Diego to San Francisco for a consultation with Dr. Laura Esserman. I needed to hear from her in person what her opinion was in my unique case. Read my blog Dr. Esserman Touts Tamoxifen
- For updates from 2012-2022, click on BLOG
- How I monitor: Bye-Bye Mammograms, Hello SonoCine Ultrasound
- Video of Donna’s Journey: 2009-2015
- My story has been featured in various media outlets. Please see Media.
As of September 2022 — 13 years from the beginning of Donna’s Journey:
All is clear and life is good!
Donna’s mission:
To Educate and Empower Women about Over-detection, Over-diagnosis and Over-treatment of Stage ZERO Breast Cancer
Please take time to review and share #BeWISE
Beyond Awareness
#Women Informed Supported Empowered
#BeW I S E is a campaign to help women get “beyond awareness.”
It provides essential information women need to know before making decisions to be screened for breast cancer.
#BeW I S E topics include:
- Risk of breast cancer
- Mammography Pros and Cons
- Overdiagnosis & Overtreatment
- DCIS (Stage Zero Breast Cancer)
- Options for Breast Imaging
- Reducing Risk of Breast Cancer
DCIS 411 
Great Donna! You go girl!!!!
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Donna, Love your website!
Our American health care system is pathetically disjointed, which makes a gray area like DCIS especially hard. I would ask why don’t most oncologists ask what causes cancer? How can you “fix” a problem when you don’t know the reason it occurred in the first place.
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I am living a parallel experience. DX with DCIS July 1, 2011, lumpectomy July 28, 2011. When no one could give me a sensible explanation as to why my treatment plan was going to be the same as someone with stage 1 invasive bc I went crazy on research. The more I read the more I knew that radiation and tamoxifen were not for me. I am going with a holistic approach and have made extreme lifestyle changes to build my immune system, not destroy it, when I need it most. I’m working with a clinical nutritionist and integrated medicine Dr/acupuncturist. I do yoga and exercise. I’m also working on avoiding stress. I feel better than I have in years. I sometimes worry that I shouldn’t have even done the lumpectomy, but I made the best decision I could at the time so I try not too fret over it. The Drs. selling their services (R/O and M/O) really fought my decision not to fall in line with “standard of care”. They tried every scare tactic they had but when they figured out I had educated myself they finally agreed it didn’t always make sense to do rads and tamoxifen. I’m happy with my decision. I will be coming up on my 6 month followup in 3 weeks. I reluctantly scheduled my mammogram but I decided I needed to know for my peace of mind. Will meet with the breast surgeon on Feb 6th. I know I’ll be nervous going through the process again.
BTW-there’s a great book called “You Did What? Saying NO to Conventional Cancer Treatment”. It was inspiring to me.
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Hi Kay. Thank you so much for sharing your story as well as recommending the book. I just read chapter one online and I am going to buy it! Please stay in touch!! 🙂 Donna
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Thanks, I will. There is another book that is constantly by my side called Herbal Medicine, Healing and Cancer by Donald Yance. It is an AMAZING source of information. Amazon is the best place to purchase it. I can’t even begin to tell you how much it has helped to educate me, my family and friends on the power of nutritional medicine. I think both books are must reads for people in our situation.
And by the way, I was shocked and amazed at what I found in the medical community also. The medical field is no longer about helping people be healthier, it’s nothing more than getting rich off of treating diseases. Even if in treating one, they create another one.
Dr. Lagios and the Van Nuys Prognosis Index were a saving grace to me in the decision making process. Along with a few other research papers written by Dr’s at MD Anderson. I was going to consult with Dr Lagios regarding my path slides but I had already made my decision to refuse radical treatment anyway.
How are you coming on the RODEO MRI?
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Hi Kay, I am almost finished reading “You Did What? Saying NO To Conventional Cancer Treatment.” It is an inspiring, well written/researched book and such an incredible story! I plan on contacting the authors, Hollie & Patrick Quinn! I just ordered Herbal Medicine, Healing and Cancer. Thank you so much for both recommendations!! We must continue to share the wealth of enlightening information!! My PCP was very compassionate and ordered a RODEO MRI within seconds of me explaining my situation. I am awaiting approval from my ins. (Blue Shield PPO) and will plan for the last week in Jan. to have it done. I have had lengthy conversations with the Aurora administrator regarding the need for Aurora RODEO MRI for DCIS patients. I offered to help spred the word! I also have an appt with Dr. Esserman on Feb 8th in SF. My naturopath suggested alternating ultrasounds and RODEO MRIs for monitoring. No more mammograms!! Curious to see what Dr. Esserman says. Stay well. Thanks again! I will put both books on my resources page!!
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So glad you found the books inspiring and helpful. I am going to be looking at alternatives to mammograms also. I broke down and decided to have this first one at 6 months because I think it will give me some peace of mind. However, I don’t think I want to keep radiating an area already prone to cancer. I can’t have MRI’s because I have an implant that will distort the picture. So I’m going to look into thermal imaging and sonograms. Will talk to the breast surgeon on Feb 6 and get her feeling. But, I’m sure she won’t like it since she’s strictly Western medicine. I need to find a naturopath but goodness it’s hard and I’m already having to fight my insurance company every step of the way on anything that’s not “standard of care” even though the other is covered. BCBS would rather drop $65K on 6 weeks of radiation than pay me the $2K they owe me for registered nutritionist and acupuncture Dr, even though the policy says they’re covered 100%. So frustrating.
I started a cleanse class this week with a Yogi and my clinical nutritionist. I’m so excited about it!!
Keep in touch and thanks for being out there! Happy health!
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My Darling daughter,
It is a privilege and an honor to be your Mother and see what you have shared with other women going through this process.
May God grant you the opportunity to meet the challenges that are before you and all the women who share their experiences, and hand in hand we all will find the understanding and wisdom to seek the answers to make our lives better as women.
I commend you, my beautiful Donna Beth, to have the ability and courage to unfold a new path and realize a destination not yet recognized by the medical community.
Well done!!!!!!!
I love,you,
Mom
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What a beautiful and encouraging note. Thanks for sharing with us.
Kay
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Oh, how I wish that I had read this blog a couple of years ago. I was diagnosed with 2.4mm low grade DCIS, and my breast surgeon STRONGLY encouraged me to have 6.5 weeks of radiation. Well, I did refuse the Tamoxifen, and won that battle with my doctors, but they insisted that the radiation was “the only thing that could guarantee that it didn’t come back”. They played on my fears, being a 40 year old mother of 3 young children. “Don’t you want to ensure that you don’t get a recurrance in the next 5-10 years?” I was asked.
Every day I wish I had never done the radiation. I know in my heart that the DCIS is sort of a bogus diagnosis, especially in a case like mine. Sure, maybe it was going to grow into something worse, but with a low grade, low-risk oncotype, 2.4 mm ENCAPSULATED DCIS cells, I still think they made a bad call.
Survivor. I thank goodness I am here every day, but I really can’t buy into the “Cancer Survivor” story that they fed me……
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journeyselvaoscura,
Thanks so much for your comment. Sounds like we had a very similar diagnosis and pressure to do radiation (especially because I was young and had two kids). The one thing I want to say is that we can not live with any regret. The radiation supposedly reduces your risk of recurrence so that should provide some peace of mind. Initially, my husband was convinced by the doctors that I should do the radiation. He said he would do it. But then he too began to see beyond the fear and was grateful for my choice. Everyone’s path is different. I hope through this site I can at least offer women another option and perspective. Wondering where you live and how you found this site? Also, would love to hear why you chose no tamoxifen?
🙂 Donna
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I saw your post on BC.org, and was led to your site. It’s a great thing, and glad that you’re posting on DCIS. I have learned a lot these past two years, and glad to see you’re sharing the information about DCIS.
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Also, I researched the heck out of Tamoxifen, and decided there just isn’t enough good research that points to cutting off our estrogen supplies just in an attempt to stop breast cancer progression. I studied up on hormones, and basically by the time I met up with my oncologist, she asked me about the choice. When I started telling her about cell apoptosis / cell growth cycle being affected by progesterone and estrogen, she stopped me and told me that I had obviously done my homework on the subject. I am wondering now if I shouldn’t have gone into medical research, as I seem to be good at it, but realize that I am only good at it because I feel the need to “survive.” Not in the Susan G. Komen sense of the word, but just surviving the mess of diagnosis, care, treatment protocols. I feel like I am battling the system as much as the diagnosis at times!! Anyway, I am happy in my choices (even though I wish I had not caved to rads), and am trying to live a very happy, healthy life. Exercise, eating very well, nutritional supplements, sunshine, laughing….. I try them all in my quest for good health. I live in Texas. You can read my blog… it’s journeyselvaoscura here on WordPress.com.
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Thanks for the feedback! I subscribed to your blog — fun! Keep up the healthy habits!!
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Hi Donna. I’m glad I found your blog (from your comment on a Mercola article). I have just been diagnosed with invasive ductal carcinoma stage 2 grade 3. I have always sworn I would go alternative if I ever got cancer. However, I seem to find myself in a sort of establishment medical funnel, guiding me from one conventional tx to another. Since it has spread to at least one lymph node, I opted for a mastectomy. That will be followed by 6 months of chemo. The chemo definitely goes against my ideas of what makes sense, but like I said, I feel like I am in a funnel where the options are pretty much decided for me. I think they won’t have to to radiation, and if they do want to do that, I think I will decline. I’ll let them take the breast and lymph nodes. I’ll let them poison me with chemo (straining my immune system which IMO should not be strained since it is how our bodies naturally kill cancer cells). I’m not sure about the hormone drugging though. That increases the risk of uterine cancer. Doesn’t make sense to me. I’ll have to do more research on that. I will use as many natural healing agents as I can now, after surgery, and during chemo. Then I hope to take over my own care completely with only natural treatment options: lose weight, eat an alkaline diet, take supplements, exercise, get sun exposure, learn and practice stress-reduction techniques, etc. I feel that I must do whatever I can to prevent my mother from having to bury me, and I guess that is why I am letting them take initial charge of my care. It is difficult to find truly effective alternative cancer treatments, since the FDA and AMA immediately call them all quackery and illegal. My surgery is tentatively scheduled for March 7th. One overnight at the hospital and 4 weeks of TLC from my mother. Then back to work and I guess on with the chemo.
Best wishes for you, and again, thanks for the info.
Charlene
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Charlene,
I’m so glad you shared your story here. I just came across a website/story which may be very helpful for you: http://www.greendrinkdiaries.com/how-i-beat-cancer/
It is truly a balancing act between the conventional and alternative treatments/doctors. I think WE always know what is right when we listen to our inner guidance. I hope you stay true to that and feel good about your decisions. Sounds like you are on a great healing journey. Sending you much peace, love and light. Please stay in touch!!! Donna
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We all have such similar stories. A DCIS diagnosis, being told it is “precancer” then being told we have to treat it agressively. I feel so lucky that I live in SF and had UCSF to turn to, but it was still a fight. I was diagnosed in 2007. Even at UCSF there was ambiguitiy at that time and I was encouraged to have a mastectomy. I am so glad I held out. I am now Dr. Esserman’s patient and she is supportive of active survellance, but reading the stories here, I am reminded how much time and energy I have put into managing DCIS over the last five years. Like others here, I can’t believe how disjointed the health care system is. I, too, seemed to be more forward thinking than my doctors, BUT once I got to UC at least the idea of less aggressive treatment was not treated as heresy. Thanks, Donna, for giving those of us taking a “non-standard” route a place to connect.
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Hi Desiree,
from Switzerland – I was diagnosed DCIS medium in May 2011 and opted for not having surgeries. I also did and do a ton of research in the internet (just finding Donna and you now) and of course ran across Dr. Esserman.
Could you expand on the your active surveillance with Dr. Esserman? Are you taking tamoxifen or any other drugs? Is it correct, that you have not have had surgery?
My original breast center refused “active surveillance” and I am more or less educating docters on the subject here of whom some have giving me a couple of weeks to live. I found another breast center now (appointment next week) who is willing to do an active surveillance, but I suspect I will be their first patient. Switzerland has only 7 Mio inhabitants, so the experience except for the traditional ways (lumpectomy with radiation, mastectomy) is limited or better non-existent and due to whatever reasons they seem not to be open to the information from the US.
Please let me know what your active surveilance encompasses! Best wishes, Petra
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My spirit is back in the game. I was trapped in the funnel of mainstream cancer treatment and really thought I had no other option, that anything else would be suicide. However, I have finally come to my senses, with the help of “You Did What? Saying No To Conventional Cancer Treatment.” So I will meet with the medical oncologist, but before I get there I will consult with an herbalist. Then I will be seeing a Nutritionist (from an Integrative Heath Care facility). I am already seeing an alternative doc who prescribes supplements. Man! He ordered a LOT of bloodwork. That’s done, so when I see him next week, I guess he will have some additional supplements to suggest to me. I’m so glad I chose not to do chemo. However, my family and friends are not so happy about it. Thank goodness my mother is on the same page with me on this!
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I was Dx w/ high grade DCIS L breast in Jan. ’98 @ age 38. I had lumpectomy done w/ clean margins. Against my will I opted to do Rads (I had too done a lof research…finding out how they really don’t know how to treat DCIS, or what will DCIS do, how some autopsied women had DCIS for god only knows how long) but I had young children and my husband/family felt that I should do it. No tamoxifen. Now Jan. ’12, age 42. Moderate/high grade DCIS R breast. Bilateral breat MRI was normal. Lumpectomy showed no evidence of DCIS, Docs had to go back and look at bopsy to make sure there had been DCIS present. Had mammo 6wks post surgery, nothing suspicious. I cancelled f/u appt. with Radiation onc, as he was leaning towards me getting rads since I did very well the first time. I was confident that mammo will be normal and I had decided no rads this time. Medical onc would take no for an answer about tamoxifen, he wanted to wait for mammo results. I meet with him in May (maybe) and my answer will be the same. Even though I do feel that sometimes I have to defend my decision to some, most are supportive. I am at peace with my decision. I found this website in BC.org as well, looking/wanting to know if there were other deciding to do the same. I knew I wasn’t the only one. 🙂
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Hi Gisel,
Thanks for sharing your story. I’m happy I am not the only one either! Wondering if you have had mammos every 6 mths post 1st surgery? I am happy that you are at peace with your decisions. That is the most important thing. Nobody knows for sure what the future holds, but we have to do what is right for us, for our beliefs and for our health. Not everyone will understand, especially initially, but I hope more women will feel emboldened to listen to their guts and keep questioning the system and standard of care. We are the change! Keep me posted on your progress and continued peace!!
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Hi again, sorry about the typos. The first Dx was in 2008, I’m sure you figured that out. After the first surgery, I had the post-op mammo after 4-6 wks like this time and then in 6 months and every year after. This time, I have only done the post-op. I mentioned to Radiologist that came to talk to me after mammogram about Aurora Breast MRI and he said that honestly he had never heard of it. Most likely I’m going to wait until next year to do Aurora MRI. I recently saw a breast cancer imaging options and issues for women under 40 symposium from UCSD on TV dated 01/16/12 (www.ucsd.tv/zerobreastcancer/) in which this female doctor clearly stated that mammograms are radiation therefore carcinogenic in itself and that they don’t know the effect but this is what is recommended, along with MRI when you have dense breasts. They didn’t mention anything about Aurora breast MRI. 🙂
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Gisel,
Thank you for the link from UCSD on imaging options. This was very informative and thorough. Amazing how the carcinogenic factor is so underplayed by the “system.” My friend Sandie says Dr. Harms is suppose to come out with a white paper on the Aurora RODEO MRI. He is the developer of this MRI and claims there is no comparison with the regular GE MRI and he has both. Not many radiologists, surgeons and oncologists have heard of the Aurora MRI…they know what they know and they don’t seem to be interested in learning about anything cutting edge or better. They do not have the motivation like we do! Avoiding radiation and mastectomy is HIGHLY MOTIVATING to me!! Thanks again! 🙂 Donna
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I have heard that DCIS can appear and disappear. Perhaps that explains the lack of evidence of DCIS in the lumpectomy. Also, to reduce my risk of developing future cancers, I will be doing thermography, not mammography, whether the docs like it or not.
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How has thermography worked out for you.
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I am a physician and was diagnosed with DCIS in 2/07. I was struck with the level of confusion at that time in both the diagnosis and treatment. Essentially in medicine, if you are unsure of the diagnosis- ie how does this entity behave (aggressive vs indolent), you can not make treatment decisions. We are now seeing some of the proposed treatments being scaled back, because in large part of women questioning the oncologists and surgeons. The core issue is that there is a lack of understanding of breast cancer, which leads to overdiagnosis and overtreatment. Put another way, if treatment of DCIS were successful- it would lead to a lowered death rate from breast cancer over all, which has not happened. Everyone knows stories of someone who was “saved” by an early cancer diagnosis, but these are mostly anecdotal and not supported by the statistics. I applaud those of you who have questioned the diagnosis and treatment, that takes courage. You are putting oncologists on the spot and pushing for a better understanding of the disease, which benefits everyone.
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Thank you Charlisa. You have articulated it well. Your support means a lot especially since you are a physician and have a deep personal understanding of the challenges with a DCIS diagnosis. I am certain more individualized treatments will come, but only when enough of us demand it. And those that must, will. Thank you.
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Thank you for sharing your story. I feel better about my decision to have lumpectomy only when I hear of other women who have done the same.
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I will look into this Aurora MRI. At this point I am set on thermography. I know I will do battle with the docs, but thermography is at least as effective as mammogram without any squeezing or radiation.
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Thank You Donna for sharing your story. I just made the decision today with my radiation oncologist not to do radiation treatment based on her recommendation. My core biopsy pathology report said DCIS grade 2 at under 3mm. Surgical pathology indicated no new cancer cells were excised with only LCIS removed with “extreme” margins. Thankfully University Hospitals in the Cleveland OH area are very big on analyzing everything and considering alternatives when your case falls outside the scope of what is considered “normal requiring the standard course of treatment”.
It’s still very early for me, so I’m still feeling uncertain that I made the right decision. Intellectually I know I have, but those pesky emotions get in the way and the “what if” games start to take over. Sites and stories like yours really are encouraging will only reaffirm that I made the right decision for me.
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I feel fortunate that I have no trust in conventional medicine, at least for chronic illness, so I am definitely at peace with my decision to do alternative treatment. When I hear other bc ladies talking about eating cakes and brownies and drinking cocktails, I am just that much more convinced that I did the right thing. My new diet is very heatlhy, and I believe I will be healthier than ever as a result of this experience.
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Loving this book right now…Herbal Medicine, Healing & Cancer: A Comprehensive Program for Prevention and Treatment by Donald Yance, Jr., C.N, M.H, A.H.G
….will recap soon!
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Neato dp4peace. I am currently reading the same book. And G.Edward Griffin’s World Without Cancer just arrived. And I’m wondering where my Russell Blaylock Cancer book might be. Should be here any time.
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To echo what the doctor said: there’s reason to question whether DCIS of the non-invasive type is even a “precursor” of actual breast cancer: they’re finding 30 times more DCIS than they did with mammograms in the 1970s, yet the rate of invasive breast cancers has NOT fallen, despite the aggressive treatments for DCIS.
The statistics are more complex for higher-grade DCIS.
I’m going to go talk to the medical oncol. on Thursday; I will ask my surgeon for my “grade” of DCIS on Wednesday when I go back for a pathology report from Excision #2. The Van Nuys Prognostic Index results indicate that there’s very little benefit from radiation for low to intermediate grade DCIS. I’m post-menopausal, so I’m not a candidate for tamoxifen, and the FDA hasn’t cleared aromatase inhibitors for use in treating DCIS in post-menopausal women; but the docs still reflexively recommend it.
Man, I do need to lose weight, though. After three rounds of Weight Watchers (lost, then gained it all back plus more each time), I’m going to parachute into Overeaters Anonymous. Seriously.
Best wishes to all….
Gail
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OOPS! one more thing — a word of warning about the MRIs. They have a TWO-THIRDS false positive rate. Which means that most of what they “find” is Not DCIS or cancer. I refused the option and my surgeon dropped the subject right away. 66% “noise” equals Bad Data. Talk about overtreating: like someone said upline, the more they “find,” the more they’ll “treat.”
Ciao!
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One last thing: here’s research on the MRI False Positives problem. It’s worse than two-thirds, actually. –Gail
Public release date: 25-Mar-2008
[ Print | E-mail | Share Share ] [ Close Window ]
Contact: Emma Mason
wordmason@mac.com
07-711-296-986
European Society for Medical Oncology
MRI’s high false positive rate has little impact on women’s choice of preventive mastectomy
Magnetic resonance imaging (MRI) falsely detects breast cancer in Five out of every Six positive scans according to new research into the use of MRI for women with a high, inherited risk of developing the disease.
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Thanks for the info Gail. Dr. Esserman also pointed this out….”the rate of invasive breast cancers has NOT fallen, despite the aggressive treatments for DCIS.” Ponder that one.
The numbers I have heard for the Aurora RODEO MRI are far better at false negative/positives than regular MRIs. A clinical trial “white paper” is in the process of publication by Dr. Harms, the developer of the RODEO Breast MRI. UC Irvine where I did my MRI also has the AuroraEDGE software: “While SpiralRODEO set new standards for image definition, AuroraEDGE further improves resolution by more than 50 percent,” said Dr. Harms.
In my case, mammograms, MRIs and thermograms all failed to see the extent of DCIS that was removed from my breast. The entire breast screening/diagnostic/treatment system needs an overhaul! Chopping away at a woman’s breast with blind surgeries based on inaccurate mammograms is unacceptable. I am blown away that we have such a barbaric system.
What needs more attention is the fact that there is a whole lot we can do NATURALLY to eliminate or reduce unhealthy cells and increase healthy cells. LET THY FOOD BE THY MEDICINE AND MEDICINE BE THY FOOD ― Hippocrates!!
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dp4peace…so glad you’re loving the Donald Yance book. It’s pretty amazing stuff! I’m still seeing the nutritionist and acupuncture Dr. Since my last posting I found a naturopathic MD and will be following up with her in a couple of weeks.
I received the dreaded “reminder card” for my 1 year followup. I guess I will reluctantly go one more time since both of the girls will be looked at this time, but I’m really rethinking the every 6 month thing. This is one of the things I will be asking the Dr in a couple of weeks. My GYN told me it’s a very tough call because mammos find cancer, but of course, they also cause cancers. At least he’s acting as if I have a choice, whereas the breast surgeon pretty much said she has to have them. ugggggghhhhhh.
Will just be glad to make the 1 year mark.
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Hi Kay,
Yes, so grateful to you for recommending the Donald Yance book! I am actually thinking of going to school to study nutrition and herbs! It is fascinating!! Everything regarding long-term health and healing is in NATURE! Our disease-management system is so completely out of whack. I am no longer affected by what the western medical doctors say. They mean well and they must protect themselves with the advice they give, but they are not educated nor trained in health promotion. They are excellent for emergencies, but our health and wellness are better served through “alternative” healthcare providers. So glad you found a naturopathic MD. Keep me posted!! 🙂 Donna
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Donna,
That would be awesome to go back to school to study nutrition! I read everything my nutritionist tells me about and wish like heck I’d been armed with this knowledge earlier in my life. Might have avoided the problem all together! But, no looking back, right? We do what we can. I agree totally with you about Western medicine. It is awesome for diagnostics and surgery-the rest is nothing but disease management with pharmacueticals. I’ll keep you posted on the narutopathic MD and my upcoming yearly check up.
Thanks for the support. It’s awesome! Kay
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I’m scheduled in June for double masectomy was told I have low grade DCIS and my option due to my small breasts was masectomy for a good cosmetic result. (having surgery on both sides to avoid any problems in the future) I see my reconstructive surgeon today and my other surgeon tomorrow I’m having second thoughts about going through this after all the info on this website. Its so confusing and frustrating. Please Help.
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Hi “leftyone.” Second thoughts are good! Have you gotten 2nd opinions — both surgical AND pathological? This is an absolute must!! Double mastectomy is a major life-changing decision that you do not want or need to rush into. Time is on your side with DCIS. There is NO RUSH! I too was told that I would need a mastectomy and good cosmetic results would not be possible with another lumpectomy. I would consult with an oncoplastic surgeon such as Dr. Silverstein in Newport Beach. There have been other women who have been told the same thing and after consulting with Dr. Lagios, their treatment options changed and were spared mastectomies. Start with 2nd & even 3rd opinions…..keep investigating…..breathe deeply…..and listen to your gut! Please keep me posted. I’d love to know more details about your pathology report…..what is the size and grade of the DCIS? How old are you? Where do you live, etc, You can also call me if you want to talk or email me at: dp4peace@yahoo.com
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I agree with dp4peace! DCIS is NOT an emergency situation. I was dx last July and they tried to rush my decision also, which never made any sense to me. Mastectomy was thrown out there as an option but my surgeon thought I was an excellent candidate for a lumptectomy even with small (barely b cup) breasts. I think part of it is also determined by your definition of “good cosmetic results”. For me the cosmetic result was not a huge factor. Having been flat chested my whole life, the thought of having to lug around new fake boobs just didn’t appeal to me. After much discussion with my husband and weeks of research, my decision was the lumpectomy no matter how it made my breast look. I told my surgeon to take whatever she needed. And if mastectomy is in the future, I will not do reconstruction. I consider my surgical scars my survival badges. I realize that younger women (I was 56 when diagnosed) may feel differently. I just didn’t want to endure more surgeries, risks and everything that went along with reconstruction to obtain something I never had to begin with.
The most important thing is to ask questions and continue to do so (don’t be surprised that Dr’s won’t be pleased and may not answer your questions), get more opinions and do your own research. You need to know and understand your pathology, tumor size, grade, risk factors, etc. And most importantly, listen to your gut. You have to assume the role of being your own advocate.
This is the most personal decision in the world but you’ll make the decision that’s best for you and find peace with it. Time is on your side with the decision process.
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I have had 2 other pathological opinions from MD Anderson and the Mayo Clinic in Arizona. They all agree with DCIS. Nuclear grade was 1 to 2 low to intermediate, perdominantly cribriform and micropapillary types with associated microcalcifications and no necrosis. I turn 52 this year live in Colorado very active not overweight and overall healthly. Like you I’ve started with my green drinks and no red meat staying away from caffiene. Still have a visit every month can’t wait for that to stop !!!! Oh and I have tested positive for both estrogen and progesterone receptors.
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Where’s the rest of Donna’s journal/log? What has happened to her since her last post?
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Hi Connie!
Thanks for your comment. I have just added, “Please click on “blog” to see my posts as I continue on my journey of health enlightenment amidst DCIS…. How will I monitor, reduce my risk of recurrence and stay at peace….” This is where you will find my continued journey. I will be adding a new post shortly! Thanks do much for following me! Have you shared your story? Would love to hear more from you!!
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Hi Donna! I left you a comment on your home page and now I see your story told so eloquently here so I apologize for not having noted this part of the site first and having asked about your treatment when its all spelled out quite clearly here. Thanks so much for your open sharing and creating this vital forum for so many of us with the same doubts and confusion. I too was mis-led during the mammography and biopsy period but I haven’t gone any further yet b/c I’m really distrustful of a system that can’t answer some of my basic questions and where the professionals I’m working with even contradict one another. Yes, yoga, good nutrition and less stress is my recipe for my own healing. I have to decide on whether to allow the lumpectomy they’re recommending to be a part of this picture or not. I have not yet decided. I’ll learn more from Donna Pietracola, a well respected breast surgeon in my community when I see her next week for consultation. The more I learn, the more I believe that watchful waiting is my best course of action as long as I’m actively building my health with great food, nourishing herbs and positive vibes from loving people.
This may be harder than I think b/c even some of my friends are fearful and their worry vibes are not helpful to me at this time.
Thanks for listening and giving us all a place to vent, learn, share and celebrate!
Peace and beauty to you~
Chrys
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Chrys, You are where we have all been. And that’s a very confusing place. I did opt for the lumpectomy, but refused rads and estrogen inhibitors. I chose working with a clinical nutritionist, acupuncture, yoga and a homeopathic m.d. for my healing. There are several great books to read about nutrition and healing, if you haven’t already read them. I’ve listed them in previous conversations with Donna. Just remember to breathe and do your research. You have to be very educated to be your own advocate. It was the only way I could find any support from western Dr’s. was to prove I had done my homework. They will throw a lot of statistics at you. Keep in mind that most of these are “group” statistics and not your individual risks.
BTW…the lumpectomy was a snap. Much easier than the biopsy. I had the surgery on Thursday morning, took off Friday, had a wedding shower at my house on Saturday and was back at work on Monday.
Good luck, will be thinking of you while you go through the process of deciding, which in my opinion is the worst part!
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Thanks you Kay for your supportive message! Yes, I agree completely. The decision making process is probably the biggest challenge. My friend Mary opted for the same course that you took when she was diagnosed this past February. How long ago was yours? I may opt for the lumpectomy and I may choose to wait and gather more data first, and particularly find out all I can about this particular cluster of mine, rather than, like you say, the group statistics. I want to know more than they’ve told me so far so yes, doing my own homework is crucial and I welcome this site for the great expertise of women like yourself who are willing to share with those of us just beginning this journey.
Wishing you a peaceful holiday weekend ahead~ with much gratitude~
Chrys
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I was diagnosed July 1, 2011. I’ll be due for another 6 month checkup first of January. That starts the whole cycle of whether on not to have yet another mammogram. So far, I’ve gone ahead and done them, along with sonogram and thermography for peace of mind. I just don’t see me doing them every 6 months for 5 years like they want, but for now I’m taking them one at a time and following my gut. I thought “if I can just get a clean report at my 1 year I’ll be at peace. Now I realize that those checkups are always going to spark a certain amount of fear and fret no matter how long it’s been. Other than those times I don’t think about it much. I just concentrate on my health and maintaining my healthy lifestyle.
Have a blessed Thanksgiving!
K
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Hi Kay,
i am very encouraged by your story and would like to know how you are doing now. also want to find out more details about your own holistic healing and prevention experiences. i was recently dx with DCIS and had a excisional surgical biopsy (lumpectomy). am in the processing of making decisions on next steps. i found this website is so resourceful and refreshing and have talked to Donna. i hope that i can learn more about your journey.
love and peace,
smile
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Hi!
I am doing great! I am still pursuing my original holistic plan. I had my 1 1/2 year check up last month and all was clear. I am still doing mammograms every 6 months, which I’m uneasy about, but for now I feel better about having them then not so I go with my gut. I think that after the 2 year mark I may see about going yearly. I know that will send my breast Dr and radiologist into a tailspin, but I’ll address that in August.
I think I had decided from the very beginning that radiation and estrogen therapy were not for me unless the cancer turned out to be something other than DCIS. I literally had a voice inside of me saying, “no”. The decision is hard because the Dr’s are really intimidating and condescending about it. You HAVE to educate yourself to understand those percentages they’re throwing at you. I was shocked when I found out they were based on groups and not individuals. Adding to my frustration, I had 2 path reports. One said my tumor was estrogen +, the other said estrogen -. The oncologist was still insisting I take Tamoxifen. She walked in the room, introduced herself and then started the Tamoxifen lecture. After several visits, she finally relented and said ok, you don’t have to do it. I remember the “looks” I got from her staff when I left-like I was the worst patient ever, and the stupidest. Don’t let them intimidate you into doing something that doesn’t feel right. My tumor type, grade and margins put me in the last group of the Van Nuys Index for being able to get away without rads & estrogen. But honestly, I don’t think I would have done it regardless. I could never get one Dr to explain to me how treating DCIS the same as invasive cancer made sense. I think I even convinced a couple of them that it didn’t, haha. The only answer they ever had was “standard of care”. In other words, it’s what we do to keep from getting sued.
My course of action has not changed. I am sticking with my holistic healing plan. I see my Registered Clinical Nutritionist every other week, I see my acupuncture Dr weekly, I see my holistic MD every 3 months. I go for my diagnostic mammo every 6 months/and yearly for the non-cancer breast, and yearly I go for my GYN/general checkup and have a full body thermography done. I exercise (pilates/yoga twice a week) and walk. I try to reduce the stress and work load, although I’ve slipped back a bit on the work load…need to get back in line on that. And I eat healthy and take the supplements my nutritionist and Dr have given me. (One note: last month at my yearly GYN, I was told I had mild vaginal atrophy, so he started me on Vagifem, a very low dose topical estrogen. Because only a small amount gets into the bloodstream it was approved by the breast specialist and oncologist. So see, that right there doesn’t make any sense. They want to give you Tamoxifen to deplete every ounce of Estrogen from your body, then they say ok to adding it back in for the vagina.) I am using the Vagifem and it has helped with my symptoms. So, I’m good with it because quality of life is important too.
So, I continue on and don’t look back. I’ve chosen my path and what’s done is done. I can honestly say that DCIS was a blessing to me. It made me change and grow. It made me live healthy. And it taught me to live in the moment and be not take the good days for granted. It has shown me that I’m stronger than I think.
If you can read those books I told Donna about earlier in the blog, it will help. If you need to chat please feel free to email me directly at mk.ashley@mac.com
Peace and hugs. You will figure out what is best for you. Just take your time, be still and listen to your body.
K
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so in view of all I have read on this blog (for which I am very grateful and pray for each of you to completely recover) does anyone feel that thermography is a valid reliable tool to detect breast cancer? Or would a thorough breast exam by GYN be as useful? Have read that thermography picks up bruising etc and might detect it as a cancer. Thanks for your thoughts. Have not had a mammo for 20 years and wondering whether to go ahead and have one. brit
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Wow! Thank you so much Donna and to the rest of you courageous women for sharing your personal experiences and the struggles you have encountered in being diagnosed with DCIS. I am 56 and was recently diagnosed with DCIS on the right breast after I had a mammogram and then had a biopsy to confirm it. I believe mine is low grade zero DCIS. But shortly after that I had to go back for an MRI and then was called back to have an MRI biopsy where I was told that they found two areas that were Atypical Ductal Hyperplasia which was in the same area as the DCIS. During the MRI biopsy, the Radiologist cut my blood vessel and I am now sporting a painful and itchy lump (hematoma) that is gradually and slowly in the process of healing. Waiting for it to completely heal gives me time to do more research about my options since seeing the surgeon. She gave me the option of a lumpectomy with radiation (95% cure rate) or a mastectomy (99.25 % cure rate) but said it was entirely up to me. I guess it was hard for me to fathom how I went from a zero non-invasive and pre-cancerous diagnosis to be given mastectomy as one of my choices if it wasn’t even cancer yet! My surgeon said that the area would be large and might cause disfigurement so that was why she thought having a mastectomy with reconstructive surgery would be a better choice… as if having fake boobs was ever on my wish list! I’m thankful to Donna for giving me one more option about seeing an Oncoplastic Surgeon. But if I choose to have the lumpectomy instead, I would like to forego the radiation as well and opt for active surveillance. I’m also going to invest in the books that some of you have suggested and plan to totally change my unhealthy lifestyle as I have been overweight and stress has played a big role in my life since becoming a caregiver. I’ve been caring for my mother who is living with us and has moderate stage Alzheimer and we visit my Dad daily who is in Assisted Living due to his physical health problems and age-related Dementia. Needless to say I want to stay healthy for my own family and to be around to enjoy my future grandkids, but I also want to be heatlhy enough to continue to care for my parents. My husband has been my greatest support and help so I do feel blessed! I was happy to know that I don’t have cancer but having DCIS and ADH made me feel as though I’m doomed and felt that I had no choice but to take the conventional route…but yet this nagging feeling in my gut told me to keep on researching and seek out others that have gone through what I am currently going through. So thank you everyone for opening your hearts and being so honest, transparent, real and resourceful to those of us that are now in the beginning stage of our quest to do what’s best for our bodies/breasts and to pick the healthiest and safest way for us to stay cancer-free! I am so thankful that God sent me to this site.
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Hi Kat,
So happy you listened to that nagging feeling in your gut and found this site. Thank you so much for sharing your story and reaching out. May we all continue to share, learn from and support one another.Sending you healing light and love. ~Donna
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Thank you so much Donna for your quick response and for being so selfless in caring about all of us that share a common bond with you in our quest to remain cancer-free without having to take drastic measures (such as unnecessary mastectomy or radiation). You are an inspiration and heroine in being our voice and advocate in providing us with the latest resources available on the newest options and least invasive methods. I will keep you posted on my choice after going for the 2nd and possibly 3rd opinions! I am interested in consulting with Dr. Silverstein and need to find out if my insurance will cover it. Prayers and healing light for you and everyone’s continued good health. Love & Blessings, Kat P.S.Looking forward to reading more successful results for everyone that leaves a comment.
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Right here is the right webpage for everyone who really wants to understand this topic. You realize so much its almost hard to argue with you (not that I actually will need toHaHa). You certainly put a fresh spin on a subject that has been written about for decades. Excellent stuff, just excellent!
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Thank you for the encouraging feedback!! It is vitally important that more woman understand the real situation regarding DCIS and support one another. Thank you so much!!! 🙂 Donna
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Fabulous to hear your update Kay! You are a ray of sunshine to me and to so many other women! Thanks for taking the time to respond and connect. Much love and light, Donna
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I am 32 y.o. and was diagnosed with DCIS intermediate to high grade on left side. I am having a mastectomy and opted for double for preventative measures as doctors explain there is a high risk of developing it in the other breast given my young age. No family history whatsoever though. I was pretty confident in making the right decision about double ms, but having read this blog and all comments I got so confused.. Am I making the right decision? Is it too radical? I was (and still am) terrified having the “C” word applied to me..
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Hi. Yes, it is all very confusing. You are facing very difficult decisions. What is most important is that you get ALL the information and feel good about your decision — whatever you decide. I think it is very important to get a 2nd pathological opinion to help in making your decisions. There are definitely options to consider, such as what Dr. Silverstein offers (lumpectomy plus reconstruction on both). DCIS is not life-threatening and I would advise to take some time to make a fully informed decision you will feel good about and not look back and say “I wish I would have known.” I would also suggest having the oncotype test for DCIS done if you fit the criteria. I am curious, how was your DCIS discovered? Did you have a mammogram? Please feel free to ask me any questions or if you want to talk I can give you my #. Blessings, Donna
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Dear Donna, thank you for replying.
I’ve done extensive reading on the subject – from academic and clinical literature on PubMed to the social portals (Young Survivals Coalition) and personal blogs like yours.
I’ve sought 2 opinions from both breast surgeon (BS) and plastic surgeon (PS). Opinions complied re: mastectomy on the left as calcifications are spread over the large area, almost 90% of the breast. It is my personal choice to go for double, based on both doctors’ explanation of the increased risk factor due to young age and if the gene test comes positives. Although, there is no family history of BC as far as my family knows.
Mammogram has identified it. About 2 months ago I sensed some lumps, which I thought were just hormones induced fibrocycts or smth. Yet again, NEVER could I imagine I’d have a risk of BC due to clear family history, extremely healthy lifestyle and etc. So once I figured did feel like lumps and not just a product of my imagination, I had an appt with OBGYN and asked him to check those out. He said he did feel those too, but did not think those were anything serious and if I wanted, I could go and have ultrasound done. I went and radiologist said they’d do mammogram first. There, they saw numerous calcifications and did another close up mammogram. They then took me for ultrasound and by the face of a doctor and all nurses running around and looking pity at me I knew smth was not right. They said they wanted to make ultrasound guided core needle biopsy right away to make sure those suspicious calcifications were not “bad”. Right there, the radiologist took the sample to her lab and came out with a saddened face and “broke the news” they looked cancerous, but asked to wait 2 more days for the pathologist to confirm.
Two days after, they’ve taken me to that scary counseling room and told me it was cancer. Quoting the radiologist: “The good news, it is DCIS, which means “baby cancer”, the bad news – its spread over 9 cm area and you have no choice, but mastectomy”. They immediately put me in touch with BS and said I should schedule a surgery asap. I already had markers in me that radiologist left during the biopsy. The biopsy report states “intermediate to high grade, stage 0 DCIS”. However, both docs made a disclaimer, the final post-surgery biopsy report is the one that is the most correct and actual. Core needle only extracts a few pieces, whereas the surgery reviews the whole breast.
A month since the day of dx, I am having a double mastectomy..
Thank you again, dear Donna, for your responsiveness. I’d be grateful if we talk over the phone, but I am pretty sure I am doing the surgery. According to docs I’ve seen, the risk of developing cancer in the other breast is 0.5% a year and, of course, they mention these are crude stats. I was happy to hear, quote: “given your young age and the longer life span you’d have, your risk factor is higher”.
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I agree totally with Donna. The course you take is very personal but you have to be at peace with the decision you make, regardless of what it is. From your comments I suspect that your intuition is saying…whoa, wait a minute! Unfortunately, the Dr’s are going to push you to make a decision quickly and going to give you only “standard of care” options to cover themselves. You do have time to educate yourself AND pursue the other avenues Donna suggests. Also, read the books listed in this blog. I believe, at least where I was concerned, the hardest part of DCIS was making the decision on treatment. DCIS is such a gray area and the Dr’s don’t like to admit they may not have all the answers. They’ll throw stats at you that are pretty much irrelevant with regards to your individual risk of recurrence. The thing I could never wrap my brain around and the Dr’s could never explain (except to say-it’s the “standard of care”) was to justify why DCIS has the same treatment course as invasive breast cancer. It’s not evasive, they don’t know if it will ever be, and yet the treatment options are the same. Makes no sense. Also, the US is the only country that treats DCIS this aggressively and yet there appears to be no change or improvement in bc stats.
I was 55 when dx. The biopsy showed low-intermidiate grade, estrogen +. When I had the lumpectomy, the path was intermediate-high grade, comedo, estrogen -. However, because of the small size of the tumor and large, wide clean margins, I still fell in the range of lumpectomy only on the Van Nuys index. The pathologists both stood by their reports, so it was never decided if my tumor was estrogen + or -. I made my decision, after much research and prayer, to do only the lumpectomy and major lifestyle changes. I’m 1 1/2 years cancer free and I’ve never regretted my decision.
Just remember to breathe and please, research everything you can find and become your own advocate. You will make the decision that is right for you.
K
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I just love reading your replies Kay! My goal is to someday have a retreat weekend for all of us to gather and share in person. How healing and uplifting that would be! Holding the vision! 🙂 Donna
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Back at you, Donna!!!! A retreat weekend is such an AWESOME idea!!! I appreciate you and sharing this journey with you. HUGS from Texas!…K
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Dear Upcoming surgery,
Having multifocal DCIS does change your options significantly. I think that if mine had been the same as yours I would have seriously considered double mx. At my age I wouldn’t do reconstruction (maybe I’d get an awesome tattoo like some of the gals do) , but understand why at your age you would. But I would prefer the double mx and just be done with it, since you shouldn’t have to have any rads or other treatments with the mx.
I don’t believe that anyone on the blog has ever done a lumpectomy or no treatment with multifocal DCIS. I don’t think it would even be an option. Is that right, Donna?
K
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Hi Kay & Upcoming Surgery,
The reason I think it is sooooooooo important to get a 2nd PATHOLOGICAL opinion is because it can radically change one’s treatment decision….and YES, I know of at least one woman who was initially told she had multifocal DCIS and needed an immediate mastectomy and there were no other options. A 2nd opinion on the pathology from Dr. Lagios changed her diagnosis. His recommendation was that she did not need a mastectomy. She is older (72) so she decided NOT to have a mastectomy based on the new information. I too had a separate area of “indefinite” calcifications in my RT breast 4cm away from the area I had lumpectomy which showed on mammogram June 2011. I chose not to biopsy and just monitor through RODEO MRI. These calcs have not appeared on RODEO MRI for two years. All the surgeons I went to had not even heard of RODEO MRI. Thank you Sandie Walters for doing so much research and writing an informative article for our new website called DCIS: Dilemmas, Choices and INTEGRATIVE SOLUTIONS. Here is an excerpt from the article Sandie wrote and why I choose and recommend RODEO MRI:
The Aurora RODEO MRI, offered at 35 locations in the United States, is a dedicated MRI, meaning it is used only for breast imaging. Its unique technology provides sharper 3-D images and better resolution than a standard whole body MRI. According to Dr. Steven Harms, referring to the RODEO MRI in a 2006 interview for Radiology Today, “We get three times the signal-to-noise ratio (SNR) of most 3DFT images. We’re using that SNR to improve resolution and improve the contrast resolution. And there are significant gains in both of those. The image resolution by the number of voxels we generate is three times that of what we had before. We also reduce scan time, which is less than half of what it was and contrast is about twice what it was before. It’s a considerable gain.”
In fact, a 2012 study by Dr. Bruce J. Hillman etal showed that, while the false negative rate for whole body MRI has historically averaged 15%, the false negative rate for the RODEO MRI is less than 1%. In other words, if a RODEO MRI finds no cancer, there is only a 1% chance that it missed something, while with whole body MRI there is still a 15% chance cancer was missed. This study also showed that while whole body MRI has been criticized for its high false positive rates, typically between 32 and 41%, RODEO MRI has a very low false positive rate of only 11%. This means if a RODEO MRI finds something suspicious, the chances of an unnecessary biopsy are much lower.
With such good numbers, the Aurora RODEO MRI is a highly accurate and useful imaging tool, especially for DCIS. With its 1% false negative rate, it can provide peace of mind as an annual screening device for higher risk patients. Its accurate 3-D mapping can also assist surgeons in providing more tailored excisions and biopsies of DCIS that cannot be seen on a mammogram, while its low 11% false positive rate protects patients from unnecessary biopsies.
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Hi Donna & Friends~
It is so nice to be able to be given options…and to have the resources to do the research and have the right to go for consultations along with 2nd, 3rd or even 4th opinions depending upon your own personal decision/choice! Because at the end of the day it is all up to YOU on making the right decision that you are at peace with. For me…I’m not uncomfortable about having a double mastectomy with implants at this time unless that is my only choice left So far I did consult with everyone from my Breast Surgeon, Oncologist, Radiation Oncoloigst and Pastic Surgeon and each gave their professional opinion in regards to my DCIS (which is low to inermediate grade on the rb) with ADPs. After the consultataions I walked away feeling a little hopeful but mainly fearful, depressed, scared and confused…and after reading Donna’s blog and sites with the information provided…I made an appointment with Dr. Silverstein for a 2nd opinion and all I can say is that I connected with him right away and am more at peace about the options and methods that he uses. I will be returning in late July to take another mammogram and MRI since it is taking a long time for my hematoma to heal and Dr. Silverstein wants to get a more accurate reading from the tests. I agree with him and love the fact he will do what he can to cure first and save my breasts… and hopefully I will not have to have radiation depending upon the final results. I will definitely keep you posted but just want to say my prayers are with everyone that has to go through this difficult journey but thankful that we have a support group that was founded by Donna, who paved the way for the rest of us to share…to care and offer our love, support and words of truth, light and encouragement to one another! Take care and God bless! Love & Blessings~
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Kat, it’s so wonderful to hear that you have found options and doctors that feel right for you. That is all I wish for every woman faced with the difficult decisions and dilemmas DCIS presents. My heart is full knowing that I have helped even one. Let’s keep sharing what we find and feel and supporting one another. Blessings of health, light, truth, peace and love, Donna
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Thanks again Donna for opening the door for all of us that were in the dark about our other options in regards to our DCIS diagnosis. *Sorry about my typos…I meant to say I was uncomfortable about having double mastectomy with implants at this time. However, if that was the only choice left for me and it felt okay…then of course I too would go ahead with that option. I think we all came to your website to learn from each other’s experiences and to be enlightened and educated about the different treatments available for DCIS. It gives us courage to speak up and seek other options/opinions until we find the right fit.
Donna…Thank you for paying it forward and helping so many of us feel stronger and confident in dealing with our diagnosis. Having more knowledge is powerful but having love, faith and support sustains us and keeps us strong! Love & Blessings in His Healing Light~ Kat
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Hi Donna
I am so heartened to have come across your blog. I am in Scotland, Glasgow, UK and found an unusual hard lump. Fast forward, I went for a mammogram (I’m 41, healthy, work out etc) and they recommended an ultrasound bi-opsy. Heard nothing for 4 weeks, despite them saying everything was fine on the day. Fast forward, they called me in yesterday, I managed to see a glimpse of my name on the receptionists desk, with an ‘urgent’ next to other women’s who had ”routine’ – that alarmed me.
Anyway, after sitting waiting 1.5 hours, surgeon told me that the biopsy result was ‘unexpected’, and then told me they had found ‘pre-cancerous’ cells in my duct. He never mentioned, grade, not that I knew what that was until doing my research today. He said I absolutely must have surgery (as I have what he called DCIS) to remove it, followed by radiotherapy as if I don’t, I will ‘definitely develop cancer’. He also said my next visit will be an MRI. There’s only 1 Aunty in the whole family who developed breast cancer 2 yrs ago and has survived. But when I glimpsed my files laid out on consultant’s desk, it had lots of red ‘urgent’ on every bit of paper. I’m confused. Scared. I’ve just noticed, as I write this, that they have phoned my mobile, and I have missed the call. They are now closed. I’ve spent most of day online, reading up on what it is I have.
As you know we have the NHS here and we have a huge breast screening programme for the over 50s here in Scotland. They provide it earlier in England/Wales (ie 47-onwards). I just don’t know what to do. I am all for alternative methods and your ‘managed survellience’ but how do I suggest all this to the consultants here? Who do I ask for, a nutritionist, or? I don’t want to be cut open and scarred. I know from research today there are 5 things I should ask them: Grade, margin, size, PNV and all that, so I’m thinking of now delaying and see what they say. I’m going to ask to see everything they have on me, so as to be informed about my own course of treatment.
What I’m scared off, is being forced or bullied into surgery and then the all the follow up stuff for years. I guess I am asking, what and how should I approach the consultants as a delaying tactic so as to buy myself more time.
Thank you for your post. It is fantastic and one of the best I have came across in my first research today.
Carol
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Hi Carol,
I believe in serendipity. Just as I am writing a paragraph on decision-making for DCIS (for a new DCIS website), I stopped and read your message. Here is what I just wrote:
Decision-making regards to screening, treating and monitoring of DCIS can be challenging, especially in the face of fear, uncertainty and confusion. The most important question to ask yourself at every step of the way is, am I making an INFORMED decision? Have I asked the right questions? Do I know ALL my options? Or, am I feeling rushed, pressured and scared to move quickly?
I too had a call from the radiologist who said my file was marked “urgent” that I have an MRI after DCIS was discovered and I asked to postpone it for a few weeks. I called the “breast specialist” nurse who works with my surgeon to ask why it was marked “urgent.” I asked, “is there really an urgency or is this just to move me along the system?” She said “No, there really wasn’t anything urgent.” So, I postponed the MRI for a month (and this is with a positive margin from the excisional biopsy/lumpectomy). I did a major detox program and had lots of counseling from my nutritionist/energy healer friend and after a month I did the MRI — and NOTHING of concern was there. I chose not to have another surgery at that time even though I knew it was cut through and there was still DCIS there.
The reason DCIS lesions are almost always removed is because there are no studies of active surveillance over time. “We do know that if the cells stay in the duct, DCIS has no clinical significance whatsoever. It doesn’t cause symptoms, it doesn’t hurt you, it doesn’t kill you,” says E. Shelley Hwang, MD, chief of breast surgery at the University of California, San Francisco, School of Medicine. “The only reason we treat DCIS is we’re worried that if we don’t, it won’t stay in the duct and will become invasive. DCIS surgery is basically preventive surgery.”
Please take a deep breath. You have time. It’s important to feel good about your decisions and not feel bullied. If they bully you, seek out another medical Dr/facility. You are in control of your body and your decisions. They mean well. This is how they are trained. It’s called “standard of SCARE!” And, yes, I would consider consulting a naturopathic Dr and/or nutritionist and have your hormones/thyroid and Vit D tested.
Bravo for you for listening to your gut and for investigating! I am here for you if you have any questions or need support!
Sending you a calming, tranquil, peaceful light, Donna
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I applaud you also for listening to your gut. I too had a lumpectomy but with wide, clean margins. The fact they used to try to scare me into “standard of care” was my grade and type. I had med grade and comedo. Still, I hung tough through the bullying and chose my path which consists of working with a nutritionist, yoga & exercise and acupuncture. I am over a year and a half post dx and have never doubted my decision.
Donna is a great source of information and calming support!
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Thanks for your input and kind sentiments Kay! Nice to hear from you!!
.
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Sorry I haven’t been good about replying. Been super busy with work and grandkids but I always read your posts.
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Dear Carol–I am exactly in your position right now. The rush to get me to MRI, surgery, and radiation really put me off. The doctor made it sound like I was in dire trouble. Then she tells me it is DCIS. After confusion and fear, I started researching the whole thing and found all over the internet comments that it isn’t even cancer but mere suspicious cells and that there is a controversy in medical circles whether to even call it cancer. At this point in time, I am refusing all treatment until I know more and I would say to you, DO NOT let anyone bully you into anything you do not feel right about. Keep researching and talking and I feel that radiation does more harm than good in these microscopic cases of irregular cells. Some table I read showed that women with lump removal only with no radiation had higher percentages of survival than those who had radiation. Huh? I liken it to old amputations because they did not know how about antibiotics. Learn all you can!
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Hello. I just received the news that I have Stage 0 breast cancer. I have an appt with the breast surgeon in a few days. He has suggested lumpectomy followed by radiation. I was under the impression that this was the ONLY thing you could. Now that I’m reading this site, I’m going to take my time, research and get second opinions before I make any decisions. Thanks ladies for opening my eyes.
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🙂
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Got my 2 year “all clear” yesterday! Feeling so much peace about my treatment plan. I have no regrets about not doing standard of care.
Hope you’re all well!
K
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That’s fabulous Kay!!! Wondering if you did mammogram, thermogram or MRI? Keep up your terrific attitude! 🙂 Donna
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Hi Donna~
Just thought I would give you the update since I last left a comment. Recap: DCIS mammogram found on Mammogram biopsy in January 2013…then called in to do MRI biopsy in Feb. During process Radiologist hit a blood vessel and I was left with a huge hematoma. I have 0 DCIS grade intermediate wtih necrosis 5mm ER/PR positive on right breast and I’m 56. BS and PS recommended I get double mx with implants. I was horrified and sought out information and was so grateful to see your website which was filled with helpful and important info and latest techniques in treating DCIS. *I learned about Dr. Silverstein’s Oncoplastic surgery through your website so thank you so much!!!
I sought 2nd opinion with Dr. Silverstein in April *who is very kind and compassionate. He gave me the option that I was hoping for. Remove DCIS/ADHs from rb and will do contralateral symmetry precedure on left breast (PS also showed me before and after pictures)…so no double mx and no implants! YAY! But I would have to wait until hematoma healed and thus I returned in July for MRI/ultrasound/mammogram and now surgery is scheduled in 2 weeks.
I don’t know why I did but I asked if I would need radiation therapy. Dr. Silverstein told me that I would be a good candidate for IORT which is a one dose application administered during surgery; they are running a clinical trial for women diagnosed with non-invasive (low to intermediate grade) DCIS. I went to the interview process and filled out forms (I can withdraw or change my mind at any time) but am wondering if I should wait until after surgery to have it sent out to pathology. *I think I signed up for this clinical trial because I am fulltime caregiver for my Mom who lives with us and has moderate Alzheimer…and I am also responsible for my Dad who is currently in assisted living. Maybe I felt desperate but wanted to be hopeful about the outcome. Any information on others that have had IORT would be helpful. I’m still debating as to whether I should forego radiation altogether unless pathology findings doesn’t show clear margins.
Thank you so much for having this site because it really does enlighten, motivate and is spiritually uplifting because of the knowledge, insight, and hope that all of you have shared with the rest of us!
Blessings and Light,
Kat
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Wow Kat, I’m so happy to hear your update, and that you have had such a positive experience! I haven’t done any research on IORT, but hopefully you will get some clarity as to what to do. I do know that Dr. Silverstein can be pretty persuasive and convincing! Thank you so much for sharing your journey and always being so encouraging and grateful for this site and all who contribute! Please share with us anything you discover about IORT as well as your experience with the upcoming surgeries. Blessings for continued health enlightenment! Donna
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Mammogram and sonogram. I have metal implants that keep me from having MRIs
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Hi ~
Question for Kay…are the metal implants from breast surgery? They don’t take it out?
Donna and all: I hope this info helps in regards to IORT:
IORT is a radiation therapy technique in which a concentrated dose of radiation is delivered to a cancerous tumor site during surgery after the tumor is removed. IORT has been shown to be safe and comparable to the more traditional external beam therapy while offering significant medical and quality of life benefits for patients*.
Traditional external beam radiation therapy for breast cancer patients typically consists of six to seven weeks of radiation after surgical removal of the tumor. With Intraoperative Radiation Therapy, radiation treatment takes place during surgery, lasting about 8 – 18 minutes. IORT generally eliminates the need for external beam radiation therapy and the inconvenience of daily treatments. Unlike traditional radiation therapy, IORT uses a single radiation dose and treats a more limited area of breast tissue.
After completing a lumpectomy, the surgeon inserts a special balloon into the cavity created during removal of the tumor. The radiation oncologists are then able to deliver a single dose of radiation therapy directly to the tumor site. Typically the entire course of radiation therapy is delivered in 8 – 18 minutes. These patients wake up from anesthesia having completed not only their surgical treatment but their full radiation therapy course as well.
Hoag uses Xoft Axxent® eBx System to deliver IORT. There are several benefits to IORT:
· The radiation dose is delivered directly to the tissue most likely to harbor microscopic cancer
· IORT minimizes radiation exposure to normal, healthy surrounding tissue
· IORT provides simple, one-step treatment without hassle of radiation delivered over weeks
· IORT is profoundly convenient and it eliminates non-compliance (patients failing to complete 6-7 weeks of radiation therapy)
If you are interested in learning more about IORT or scheduling an appointment with a Hoag breast surgeon please contact us at 949/764-5780.
*Targit Trial published in the Lancet in 2010
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I should have clarified that lol. No I have them in my jaw. They won’t do MRI s if you have any type metal implants in your body. Especially if they’re close to the area that’s being examined. They heat up and cause arcs that distort the pictures and can be pulled right out by the magnetism. Sorry I didn’t explain.
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I looked into the implanted radiation balloons that are put in the tumor site while I was still contemplating radiation. My surgeon (one of the top at Baylor Dallas Cancer Center) quit doing them. She said they were having issues with them leaking and they were seeing studies that showed reduced success compared to regular radiation and complications to the breast.
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Hi Kay~
Thank you so much for your quick response to my inquiry about IORT and regarding the metal implants! Now that makes sense! lol I’m still learning because when I first came to this site I was quite ignorant in regards to the terminologies and how important it was to know your DCIS grade with or without necrosis, size and margins, ER/PR and age that plays into the Van Nuys Prognostic Index (VNPI); but thanks to you and Donna and everyone that contributed valuable information, it has really helped guide me along my own path towards making the best and wisest decision possible for my DCIS/ADHs.
I was just so elated to know that double mx was not the only option available to me that I was willing to have the IORT. But I honestly don’t want to have radiation if at all possible, however I don’t know if I’m as brave as you and Donna…mainly because I know that you both are very committed to the organic and holistic lifestyle. I would really have to train my brain to be strict and disciplined in giving up the unhealthy foods that I love and grew up with!
But at the same time I do feel I NEED TO and SHOULD make drastic healthy lifestyle changes in order to be healthy and stay cancer-free! So I do look to both of you as inspirations and role models and in a sense you both are clinical case studies in being Stage 0 DCIS survivors without having to resort to mx or rads! Because of your healthy choices in regards to nutrition, physically and spiritually staying fit and stress-free, I know that you and Donna will make wonderful nutritionists to guide and teach us everything about how to live a long quality life free of cancers and diseases! I’m looking forward to hearing more success stories like yours on this site!!!
Am praying for strength and wisdom in regards to this last choice of whether to have IORT or not. Thank you for your support and input! Will keep you posted and will keep reading for more insight and inspiration!
Blessings, Light and Continued Good Health~
Kat
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I understand where you’re coming from. Thank you for your kind words. You have to be comfortable with your decision. For me the life changes made the most sense. Thank you for saying I was brave but I think it was actually quiet the opposite. I was terrified of the radiation. Every time I considered it I felt nauseous and an intuitive voice telling me not to do it. I know I can do it if I have a recurrence but I couldn’t do it for stage 0 non-invasive. So, really, being a coward helped me make decisions, haha.
Leading a healthier lifestyle was an easy choice. I’ve eaten pretty healthy most of my life. But I wasn’t knowledgeable in what was in our food supply. When I started working with my nutritionist I was fascinated and horrified at the same time. Again, I was motivated by fear that if I didn’t do a better job I could have something much worse than DCIS. I was already doing Yoga so I just had to become more dedicated to it. The acupuncture was new and I had such an amazing response to it that it eased any uneasiness I had felt.
All in all, I gave to say that my life is much better than it was before cancer. That same inner voice that told me ” no radiation or tamoxifen” also told me “this is going to be a positive thing in your life” the day I was dx. So far, it has been.
I will be following your journey. Peace, DCIS sister.
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Its 3 am here, and I have insomnia…im 41 years old was dx 10 days ago with DCIS grade 3 comdeo necrosis. the way I got the bad news was really awful..the doctor seemed to be like a robot not really a human..it was like a schock for me,it was the night before my daughter’s bday party…I cannot even describe my feelings…the first days I knew about the bad news,i was so hysterical and I would want to scream out and say”why me”!! I have 2 little kids 8 and 6,i have apt with the surgeon on Thursday and I am so confused and scared about the options and decisions I should make…my DCIS was found thru mammography,,i never had any lumps,,i just had pain around my nipples that scared me and a voice inside my head that told me I need to go see the dr..they found a microcalcifications and then the biopsy showed the bad results,..i never expected I will get BC this young…I saw all my dreams falling apart..not to be negative but its still cancer !! doesn’t matter what your family doctor say to you and ensure that its the “best cancer” you can have….im so in shock still and go thru ups and downs ,my husband is very supportive and strong but its just not enough….I am so confused..neither treatment would be easy to take,,,none…im so scared of radiations,,my family doctor said I wont need mastectomy and if I was his wife he wont let me do it..but I have 2 small kids and I want to live long for them…I am fearing the dcis break thru the ducts and gets invasive eventhough there was no long wait for me(knowing that I saw initially the dr in june and the mamograhy was done in july+biopsy) and I learned on aug 2 about the dcis…but I am so lost and don’t know what to decide.. double mastectomy is very hard to take but I want to save my life and im so scared if I survive it this time I wont next time….im taking notes so I don’t forget anything when I see the surgeon,,but I think doctors are the same and they treat us as numbers…this is the toughest time in my life…after learning about my dcis all the little things that used to scare me don’t anymore..it seems a matter of life and death now,,some articles give optimistic prognosis so I feel positive.some are not so clear…seems like you need a crystal ball to learn what might happen so you can make your decision …
thank you Donna for this awesome blog..I live in Canada…sorry about the typing errors ,its just too late nd im not focused…looking forward to hearing from you,,amazing how reading some shared stories can empower us women….thanks again..
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Hi Nissy,
Sorry I did not see your comment earlier. I can understand the panic, confusion and overwhelm you are going through right now. It was 3 and 1/2 years ago for me, but I can remember it all like it was yesterday. I created my blog to offer support and resources that I desperately needed but were so hard to find. My DCIS sister Sandie Walters and I have been busy this past year putting together a new website with even more insight and resources to help women diagnosed with DCIS. We haven’t officially launched it yet, but here is the link: http://dcisredefined.org/
First off, take a deep breath. DCIS is not life-threatening and you have some time to make informed decisions. Mastectomy is not the only option. Please see info on Dr. Silverstein and read through everything on our website and start reading “Anticancer.” I believe it is imperative to get a 2nd pathological opinion, especially to be sure if it is grade 3 — w comedo necrosis. I highly recommend consulting with Dr. Lagios. Continue to research, get as much info about your pathology and keep questioning everything your Drs tell you, especially if you feel pressured or rushed. The fear will diminish as you become educated and gain understanding. Listen to that voice in your head and more importantly listen to your gut. I went through all the same emotions initially and now I am at total peace with all that has transpired and I do not live in fear of cancer. I am healthier, stronger and wiser thanks to DCIS. You will be too. Sending you a hug and much love and light, Donna
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Much appreciated! I will also listen to that calm inner voice in making decisions that will be the right one for me in my DCIS journey. It gives me peace and reasurance to know that I’m not alone in this quest.. God bless all of you AMAZING DCIS sisters~Kat
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Hi,
I just wonder why my post never show here,,,being newly diagnosed with DCIS grade 3, I found this blog very intresting and supporting…but apparently my post was removed???
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Hi Nissy~
Donna is absolutely right! You should get a 2nd opinion and I can vouch for that because after seeing Dr. Siverstein I was given renewed hope! Good luck and God bless! We’re all rooting for you and have you in our thoughts, hearts and prayers…Kat
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Hi Donna an Kat,
thank you for your kind replies,I love the “DCIS sisters” name…you know,i told my husband doesn’t matter whom I talk to,unless its a woman who is in my shoes,noone can support me enough or understand my fears..
I saw the surgeon on Thursday,as usual doctors have no time for all your worries and fears to take in consideration and respond to..we basically decided “lumpectomy”+ radiations,my surgery is on Sep 12.can you imagine !!! almost 1 month wait !!! he said he doesn’t believe at all that my DCIS is my lymph nodes and wont even bother removing the sentinel node to check it..cos mine is too small and most likely is even gone with the biopsy!!!
I don’t know the drs you are talking about,I don’t live in the US,i live in Edmonton/ Canada.we have here “Cross Cancer institute”..one of the best cancer centres in Canada as I keep hearing (this is where I did my biopsy) the radiologist who did my biopsy is a great guy and I have a feeling _view his experience-he knew immediately what I have ,as I can see “sympathy” in his eyes after he was done..now that I remember..but when I did the biopsy I wasn’t scared as initially the radiologist who did my mammography said 95% its nothing but we want ” to make sure” thru biopsy!!! I left from my biopsy with my husband and 2 kids and went to celebrate bcos the biopsy was not painful!! I never thought a week later my world will fall apart !!!!
I have no doubt in my mind that I have DCIS ,the 2nd opinion would be to help me decide between mastectomy/lumpectomy,,another surgeon probably???? but what new would have to say??he will leave the options for me (mastectomy) or (lumpectomy+radiations)….
now til sep 12…I will be lost and confused…if I can only know that cancer wont be back,i would chose only lumpectomy..but its impossible to know….I am not a person who can live fears and worries,,i have already anxiety and 2 little kids to look after…and school is coming soon…my kids saw me breaking down many times and this affected them a lot….
I feel so positive reading about women who survived many years after their cancer…but cancer is scary….
yesterday they sent me a big package full of stuff thru the breast cancer support organisation here and looking at all the booklettes was even more depressing !!! is like ” I really have cancer then”!!!!
since I knew about DCIS I lost my appetite and im on raw diet now,,all organic,no meat,no sugar,no coffee….
its hard when you don’t have friends…some women I know around,they show attention at the moment they know then its a new topic for “gossip” between them and their friends…yes,people can be heartless, I had to talk to someone ,a woman,especially when I first knew…looking back 2 weeks ago I think I rushed opening up to ignorants who don’t even care….
if DCIS is a lesson, I sure learned a lot…
please stay in touch ,I love to read all of your kind words and make me feel better to share my thoughts with you…
Thank you…
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Nissy, I know it feels easier when you know you are not alone facing hardship like this. I understand you as none else – how terrified you are and all the fears, etc. – as I’ve recently gone through the same myself. I am only 32 y.o.
Let’s look at the “positives” of the dx.
– Yes, unfortunately, it is DCIS, however just a couple of weeks ago they’ve officially announced in the media, it should NOT be called the horrific term “cancer”. (I wish the news came out a couple of months sooner, it would save me so much nerves and mental anxiety);
– If your DCIS covers a smaller area, you have a choice of lumpectomy. However, read this Donna’s website as well as her page on Facebook, plus do lots of research on naturopathic approach. I’ve done tremendous research on this topic and learnt that only 60% of women with DCIS would ever develop it into invasive cancer, and 40% of women over 80 y.o. who died of natural causes (age), never knew they’ve had DCIS and only pathology prior to burial has identified they’ve had it. So, it is NOT life threatening.
– There are plenty of books on healing even advanced forms of cancer naturopathic way. Let alone DCIS. HOWEVER, this approach might best fit someone of a very content personality and who can well manage stress and anxiety of the dx. It would not fit me, because I relate myself to you – I am of a hypochondriac nature and I’d lose a peace of mind knowing I have a pre-cancer. Therefore, I myself opted for a double mastectomy although only one breast was affected. Then, I did it solely for a peace of mind. However, after the surgery I found I am BRCA2+. That reassures I’ve made a right choice.
– In other countries (except for Western Europe, US, Canada), DCIS is not even diagnosed and women just live with it.
They’ve confirmed you it is only DCIS. You WILL be absolutely fine and live long life and see your grandchildren and generations after. What IS important for you at this moment, is to calm down and manage your reaction to the situation. Because stress is the major cause of chronic diseases, and cancer in particular. Reading you, I’ve had a feeling we are very much alike personality wise. And the type is called “carcinogenic”. Below is the link to what it means.
I’d highly recommend you care for your emotions right now. Read the book “Getting well again” by Simonton, Carl. I wish I had it when I was first diagnosed and was going through the mental agony you are experiencing right now. Read it, and you’ll feel much better.
Other resources that I think would be super helpful to you are:
– “Beating cancer with nutrition” by Quillin, Patrick
– “Herbal Medicine, Healing & Cancer: A Comprehensive Program for Prevention and Treatment”
Metaphysical authors (mind-body approach):
– “Wishes fulfilled” by Wayne Dyer: an absolutely great book for someone struggling with negative/fearful thinking
– “I declare” by Joel Osteen (religious approach to the idea of mental processes contributing to the manifestation of events in our lives). I got his book for daily dose of inspiration and mental shift from fears towards positive thinking
– Louise Hay – http://www.louisehay.com
Other web resources:
– Budwig center – She is well known in the cancer research and treatment world, especially for her famous diet reversing the disease. If you google “Budwig diet” you’ll find a lot of information on its effects – http://www.budwigcenter.com
– Carcinogenic personality type – http://www.budwigcenter.com/cancer-personality.php
– Budwig center blog on healthy nutrition – http://www.budwigcenter.com/blog/#.UfHUmRagr7E
– Heal you life – http://healyourlife.com
– Lissa Rankin – http://lissarankin.com
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Hi Nissy and Hopeful32~
This is what DCIS sisterhood is about…all of us connecting from around the world offering words of wisdom, support, comfort and sharing experiences that are helping others in making our own personal choices that we feel at peace about. So all I can say is that I’m so thankful to Donna and Sandie for the wealth of information and resources on their websites re: DCIS and for others like Kay and all of you caring sisters for sharing your stories and experiences. As Nissy said it really helps us to feel connected with others that have or are going through similar situations who understand and empathize. DCIS sisters develop a strong bond of unity in support and comradeship as DCIS survivors…equipped with knowledge, strength, truth and courage! Love, Peace and Blessings, Kat
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Hi Kat,
Thank you so much for your supporting words,I feel much better every time I get on this blog…I don’t have real friends here..everyone around here seems to be so kept for themselves and very self absorbed,as I said unless its a woman who is in similar situation she wont really understand,who would think this will happen to them…..my family side all overseas and I cannot even tell them as no one wants to hear bad news about people that he loves from far away…really not much can be done and my mother would lose her mind…
Hopeful 32- You don’t know how much your comment made me feel so much better:)))))) after a gloomy day full of drama and tears ( I really cannot control it ) eventhough my husband tells me to stay strong for our kids who are watching me going thru those hard moments..when I read your comment,I felt hope again…it feels like I need to hear constantly” you’re going to be ok,and you’re going to live long”….especially from someone who’ve been thru this and who knows more than I do…
I would love to hear more about your experience-Hopeful 32..and I thought “im young” to get it,,apparently much younger women than me are going thru this !!! how did you know you had it? mine was not even a lump,it was just a strange pain ,,I followed my gut and went to the dr,something so abnormal about that kind of pain…my DCIS is high grade which makes me scared..with comedo necrosis…so an aggressive form of DCIS…I would love to go for natural remedies once I m done my lumpectomy…but doctors will never advise so…im already switched to all organic ,and I read lots about hemp oil,”essiac”,,and I get lost..I go to the organic store and buy all this food that I didn’t use to eat,,,feels like these are my only weapons to fight this ugly disease…I have no appetite anyways for “normal food” and Im scared of eating it,,I know it sounds funny ,but this is how my life has been upside down since I knew…I eeven bought a juicer and every day I have green juice….anything that makes me think I am fighting…
but again you are right…alternative medicine wont work with the way I was made…I went thru your links (and think you so much for sending it) and I fit highly the cancer personality…I couldn’t believe…I always thought that stress and lonliness were killing me for the last 10 years,ive been always a person who live in fears and worries since a very young age before I came to Canada,always centered on others not myself at all,trying to please everyone around to feel accepted…I never thought It will turn this way,,so serious…my grandmother had BC but she was 80,my aunt has it but shes in her 70s!!! I always feared the day but never imagined this young!!! its good to know that this DCIS is a big deal only in this part of the world,while some women just live with it and don’t even know!!!!?? …. I am SO GLAD to hear”its not life threatning” but obviously they treat DCIS aggresivly..I understand having a lumpectomy… but radiations is a very scary idea !!! I think what I will do is I will go for lumpectomy then do the genetic test to see if I am positive??!!! in this case Im going to do bilateral mastectomy….my life is much more important than my breasts,,eventhough it still terrifying for me…but the genetic test takes long as I heard my doctor saying…the cancer world is very complicated and its so hard to predict…I would love to hear how did the bilateral mastectomy went for you? did you do any reconstruction? how long does it take to recover and do you regret….?
I told my husband today ,I feel so different from everyone else,,everyone else”s life looks so normal,,,”normal” is something I would wish to have now….amazing littles things that we used to take for granted….
as I said ladies you made me feel much better with your support and kind words,,I feel as we are so close now with our shared experiences..in fact I had a smile on my face after reading your comment and I had my appetite back for a bit….
please stay in touch always and would always love to hear from you all…
Blessings….
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Nissy, oh my, you resemble myself so much – parents living overseas, living to please others, loneliness and etc.
Unfortunately, cancer hits young women too. When I came across DCIS, I discovered the Young Survivors Community (ycs.com) where I found invaluable emotional support during the worst times. There, there are 23 and 25 year olds with advanced breast cancer and way worst situation than ours. There, someone with DCIS is viewed as a lucky one. So count your blessings, Nissy. It is just DCIS, you have children, husband, live in Canada and can afford the best treatment. You will be JUST FINE.
I do understand you well. I myself was clinging to doctors and people familiar with breast cancer (BC) to hear this “you’ll be fine” reassurance. And you will be, with God’s mercy.
To me, it was a total shock, disaster to learn I have DCIS given NO family history whatsoever. On neither side. Not even among aunts or other extended family. On one of self exams, I sensed some lumps, but wasn’t sure.Requested it be checked by my OBGYN, who originally dismissed it due to my young age for the BC. I pursued another doctors in that practice to check it and he ordered an ultrasound, commenting he did not think it was anything serious, but sent me just in case. I went to the radiology center for the US, but the radiologist started with a mammo first, then extensive mammo, and ended up doing biopsy and placing markers same time. I was terrified. Had to wait for a week for the results and it was the worst agonizing week ever. In a week, I came back and was taken into a separate room when she announced I had “baby cancer”. It was awful. I was single, had not a single family member in the US, was here on a work visa and on a very tight budget. I remember I got suicidal thoughts then thinking “what’s the point of struggling?” The major regret in life was not to have children, which was my dream since I was 18. Anyway, fast-forward:
I rushed into surgery and had it done 3 weeks after dx. Having hypochondriac nature, lacking enough knowledge about DCIS and terrified of the “C” word connection, I decided on double mastectomy. It was a traumatic experience, but more so mentally than physically. I do not regret I have gone for the double, as it gives me a peace of mind, which is important given my oversensitive nature. Four months after mastectomy, I am still with expanders at this point awaiting a replacement reconstructive surgery. Cosmetic surgery is pretty advanced and I do not worry for the results. Actually, my new boobs may look better than old, but of course, nothing compares to the natural feeling. Oh well, I have to accept the life’s testament and just live with it.
Grade 3 sound aggressive. I had the same and doctors worried I had about 10% chance it went invasive. Thank God, it wasn’t, which they only confirm after the surgery when the whole tissue is taken out and thoroughly dissected at the lab.
I am moving on with my life. Living each day to the fullest and thanking God for every single day. I feel happier now than in the recent past before dx as I am so grateful for each God given day. Experiences like these teach one to not take life for granted and appreciating it on a very different level.
Yet again. Having DCIS is NOT a death sentence. YOu will be fine. What is important for you right now is to CALM DOWN and put together the list of actions to deal with the situation. Consider it as a bump on the road. Once over it, life will seem even brighter and more beautiful than before. Find peace in prayers, if you are a believer.
If you have questions, feel free to ask. I’ll be traveling in the next couple of days, but will respond once I am home. If needed and if it makes you feel easier, we can email or skype chat. Take care and God bless.
PS: Thank God, 2 months after surgery I was back to the normal life – traveling, jogging, going to the gym for light workout. If you opt for mastectomy, it is doable. First two weeks aren’t fun, but recovery goes fast from there on.
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Hopeful 32- This nickname fits you perfectly…:) everytime I read your words, I feel security and hope and rassurment again that everything is going to be fine by God’s will and that I will be in good hands here in Edmonton,as I know we have good doctors and a good cancer centre here,,,a huge building when I used to drive by to get downtown ,I didn’t even want to look at,,didn’t dare…Ironic right? who would even imagine….
today I had a better day..it was sunny and I kept remembering your rassuring words all day ..even my husband was happy to see me like this…now,if I get a bit down he reminds me “your DCIS sisters” told you not to worry” !!!!! 😀 funny…he is of course relieved that Im getting support from nice ladies on this blog cos he is not enough and he will get tired with time…
I had kids when I was your age,like you I dreamed all my life about having kids,,when I finally found the good guy and had 2 kids who started growing up,this came to me to blow all my dreams away( the first 10 days I learned about of course,the hysterical moments,the suicidal thoughts(as exactly you mentioned) as I didn’t want to suffer,there was days that I would scream and would want to rip my clothes off as im in complete disbelief still…) with no one to talk to…I went from my desperation to a neighbor that I don’t even like just cos I needed to talk,,and who gave me a cold shoulder and left me at the door…I know look back to that day and I think it was as hurtful and humiliating as much as the day I knew about my DCIS…sometimes I ask myself” was I completely out of my mind to go knock on her door??? of and btw,she’s a DOCTOR!!!” !!!! HEARTLESS people…
Hopeful 32-you were hoping you had kids,in my case I was hoping I had no kids,,,you don’t even imagine when I knew about the bad news the first thing I said” but I had 2 small kids!!!!!!!!!!!!! but tomorrow is my daughter”s 6th bday”!!!!!! when you have kids,,mostly this is what matters,,especially kids this young !!!! I would look at them and burst into tears ,,fearing who would care for them if im gone….no one would love them as I do….moments of darkness that I canno even put here in few words…
I am a believer,and after this happened to me,despite my bitterness and anger,I found refuge in God and prayers,,,I felt during my prayers serenity and comfort…I felt this happened because I was missing God in my life for the last years,,i don’t know how to explain it..its a whole lots of mixed feelings of fear,belief in fate,feeling of badluck,a circle of feelings of ups and downs every day…
I am glad to hear that all went good for you ,I can tell that you are a smart young brave lady!!!!! to go thru all this on your own!!!!!
I would love to connect with you via email..I just cant post my email address in public..if you like I can create an email account then will leave it here ,,my email has my last name in it,,believe it or not I am so afraid somehow those bad news reach my mother overseas,,i know I am paranoid a lot,but I don’t want to take chances..i need privacy and I tell you the only lady I told her when I first knew was not really a close friend but she went and told all of her friends !!! and I knew that,,i was so disappointed and I felt that im just a new substance for their conversations !!!! I keep telling her to keep her mouth shut as I don’t want the parents at school to know about my case !!! it will be devastating for my kids,i don’t need their pity,,,i need real support…
I wish you a very nice trip..if you have no problem leaving your em here I will contact you when you re back ,otherwise I will create a new em and will leave the address here…
Thank you so much for your support ! I appreciate a lot you taking time to put down these kind words above….
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Nissy, Hopeful32, Kat and anyone else reading these posts,
Thank you all for sharing your real and raw emotions. It is so evident how scary it is for all of us initially and how little real understanding, support and guidance there is out there for those diagnosed with DCIS. It is my mission to create a safe, supportive and caring environment (both online and off) to help alleviate fears and empower women with information that can lead to better decision-making and happier, healthier outcomes. As my wise friend Adriana told me from the beginning, the FEAR is the worst part of a DCIS diagnosis. Adriana told me any decision made from FEAR was not a good decision. She continually reminded me to stay calm, breathe deeply and investigate. http://dcisredefined.org/stories/donnas-story/
Despite having a friend who was an amazing healing guru, I still felt desperate to feel understood by someone else who had DCIS — someone who could totally relate to the fears, anxiety, aloneness and craziness that I was feeling. It warms my heart to know that we can console each other like no therapist or wise guru can! So I thank each of you for pouring out your hearts and sharing intimately. And, thank you Hopeful32 for all the EXCELLENT LINKS and resources!! I will add to the growing library of resources!
I am excited to share with everyone that I have been invited by a research team at Duke University to participate in a Panel of “Stakeholders” regarding “Future Research Prioritization: Management Strategies for DCIS.” I am the one “patient advocate” among some of the top experts in the world on DCIS — discussing and ranking issues that are of most importance to DCIS patients. Other stakeholders are from National Institute of Health, National Cancer Society, American Cancer Society, Harvard, UCSF, CDC, American Society of Breast Surgeons, National Breast Cancer Coalition and Cancer Prevention and Treatment. On one of the Power Point slides, it stated “DCIS is not cancer, but may become invasive breast cancer.” This one statement is HUGE!!!! They are discussing the problem of “communication” and the potential name change to remove the word “carcinoma” precisely because of the hysteria and harm it has been creating.
While this is all very exciting and a huge step in a positive direction that will ultimately benefit thousands of women, I know there is a real need NOW for support — which to my knowledge doesn’t exist specifically for DCIS (other than message boards on http://www.breastcancer.org which I found to be more depressing than helpful). My heart goes out to each and every “DCIS sister” and I wish I could talk to each of you personally. I know how much it is needed and I made this website/blog so that we could all have a safe place to share our real feelings and then find the like-minded support and real empowerment we need.
Wouldn’t it be great to have a “DCIS Support and Resource Center?” and an annual “DCIS Conference and Holistic Health Retreat?” These are some of my visions.
I am presently re-reading “The PH Miracle” by Dr. Robert Young. It is one of the first books I read in 2010 after being diagnosed with DCIS. It was a huge part of my re-education about how the body works and heals. I highly recommend it!
Much love, light and a huge hug to you all! Thank you so much for being a part of this growing sisterhood.
Peace, health and blessings,
Donna
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Hi Donna~
Thank you for having this intimate website where we each can pour our hearts out and squelch some of our fears as we gain strength, courage, comfort and hope from our wonderful DCIS sisters! I am so happy that Hopeful32 reached out to Nissy and they share a common bond. It’s true that sometimes you can’t find that element of understanding and support from friends who have not gone on the same journey.
I remember moving here away from my family and friends many years ago as a newlywed. And I also can identify with that sense of loneliness and homesickness. And once I had my children I felt even more isolated and joined a “Mommy & Me” group which was a blessing to me as the friendships I made through them are what helped me to survive all the ups and downs of parenting because of their camaraderie and support! *So I definitely understand how Nissy must feel because of her deep love and concern for her husband and young children!
But as Donna and Hopeful32 and I feel…you’re going to be okay Nissy and you will get well now that you are armed with all the information/options/latest technology…and most importantly your strong faith in God and of course your new bond of friendships developed through DCIS sisterhood. So I believe there was a reason why you were restless and couldn’t sleep at 3am and you asked for help and God heard you and guess what?.. so did Hopeful32 who instantly connected with you! How wonderful is that! *It means never give up little sister…have faith and keep moving forward!
The fear and devastation I felt after my DCIS diagnosis led me to Donna’s website which was the light at the end of the dark tunnel for me with her very personal and relatable stories from her and other DCIS surviors and also the wealth of informative and helpful resources!
***We’re so proud of you Donna and know that you will be a great advocate and strong voice for those of us diagnosed with DCIS…and are survivors!
I’ve also posted on the Community Forum for Breast cancer and it too is very insightful but a lot to search through so it can be time-consuming! It’s unlike Donna’s DCIS 411 site where you get notified of any new postings and comments and you feel a very personal connection with others that share their initial diagnosis of DCIS and the emotional rollercoaster ride that goes along with it.
Donna,Sandie (who also has a very helpful website too) and Kay were instrumental in relieving a lot of my initial fears and educating me about DCIS…it’s almost like they are holding all our hands and walking us through each step of the process. Eternally grateful!
Much love, healing light and blessings to all my DCIS sisters~
Kat Ü
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Thank you Kat! It’s sisters like you that fuel me!! I want to devote even more time to help support our DCIS sisters and our cause! 🙂
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Hi Donna~
All the hard work you and Sandie are doing on your websites to offer up-to-date information and treatment options are so appreciated because you both put it in simpler terms for us to understand and make it easy to decipher and follow along!
I do have a question: I wanted to know if Dr. Silverstein and Dr. Lagios worked together on the VNPI…does Dr. Lagios figure it out differently from Dr. Silverstein?
I spoke with Sandie and I am considering sending all my slides and report to Dr. Lagios to get his opinon but I would have to get it tomorrow and Fed Ex it so he will receive it by Wednesday and Sheila said I should have an answer by Friday in regards to the need for IORT or not. My surgery is on Tuesday, Aug. 27th.
I remember you saying that Dr. Silverstein can be persuasive. I still have confidence in him as a skilled Oncoplastic Surgeon but wasn’t sure about his stand on No Rads since he felt IORT is a better way to go versus WBR.
Thank you Donna and Sandie for always listening, caring and paving the way for us that are learning from your great examples and leadership!
Love & Blessings~ Kat
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Hello from Canada to all the DCIS sisters on this blog…
I woke up from a very bad dream so I decided to come on Donna’s blog to feel a bit better..
I want to thank you-Donna and Kat-for your kind words and support..as I said once I feel much better after I read your posts…
I second what Kat said about Donna’s being a part in the DCIS new approach..apparently DCIS is very controversial…if they don’t consider it as a “cancer” why would should be treated as ‘formal cancer” patients !!!! this question is torturing me ,as I am so confused about doing the radiations or not after my lumpectomy….I will have my surgery on sep 12.. and my doctor say that I wont be sent straight to radiotherapy and that the oncologist will explain everything to me…
I am not comfortable with the idea of radiations…just more toxicity to my system I believe…
since I knew about my DCIS(grade 3 with comedo necrosis) I switched to raw food,vitamins,,,trying to alkalize my PH…I am trying every natural remedy I hear its beneficial for breast cancer…reading a lot doesn’t make it easy on me to make the right choices and leave me in doubts….Thanks to “Hopeful 32” I learned about the Budwig Diet,treating cancer with “cottage cheese and flax seeds oil” ..I was so excited to try it as I started reading that flax seeds oil is rich in phytoestrogene that is not good for women with estrogen positive..im not sure if I am positive but I have a feeling I am…(early puberty,having kids after 30…) ,some articles say there is no harm from using flax seeds oil,some say its not good….leave me stuck there between yes or no…
I am so confused about the right decisions to make,unlike Donna’s who is supported by a whole professional team,I am not and I have to look out myself for the right things to do…
I want to ask Donna,why did you decline the radiotherapy?
and Kat,can you tell me more about your experience with DCIS please?
I appreciate all of your time and answers..
I hope some day I will be able to meet all of you in real…
Hugs..
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Hi Nissy,
Sorry for the delayed response to your question here. It’s been a busy time (fisrt week of school) so I have not been too good at keeping up. I wanted to answer your question about why I chose not to have radiation. This is something that initially was torturing me (and that lasted for over a year….In my gut I knew it didn’t feel right, yet I was getting so much pressure and statistics from a team of Drs. It just seemed crazy to me from what I was reading about low grade DCIS. I researched like crazy and I felt desperate to find someone else out there that also chose no radiation. That’s when I found Sandie Walters and her blog “dciswithoutrads.” I learned about Dr. Lagios, the VNPI and I just kept investigating and seeking more integrative insights. I came to the point where I was absolutely certain I had made the right choice for me (despite even my VNPI score being 8.) I have written a couple of blog posts specifically about radiation and my choice: https://dcis411.com/2012/04/14/radiation-or-not/
Hopefully that will give you some more insight. Would write more but I have to go lay down with my munchkins! 🙂
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My story mirrors Donna’s. My instincts were telling me that rads made no sense for me. After much agony and research I made the decision to forgo rads. The Drs tried all the same scare tactics and pressure with me, and became very frustrated when I asked questions that they didn’t want to answer, or didn’t know the answers to. I became so well informed that I know they dreaded my appointments…hey, turnabout is fair play, right? In the end, all of them begrudgingly agreed they could go along with my decision not to do rads or tamoxifen.
I had DCIS, intermediate grade, comedo with very large clean margins after my lumpectomy. There were conflicting path on whether the cells were estrogen + or -. One path said neg one said positive and they both stood by their reports. Which added to my confusion for post lumpectomy treatment. But ended up solidifying my belief that if they couldn’t even agree on what type it was, they had no basis for their treatment plan.
I am 2 years cancer-free and I don’t regret my decisions. Stay strong and do your research. The answer that is right for you will come to you.
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Hi Nissy~
I’m proud of you for doing all the research before you make up your mind! I for one think that is very important because that gives you more options and treatments to choose from that fits your situation and comfort zone. I’m much older than you since I’m 56 but all I can say is DCIS is the same for all of us…from the feelings of horror, shock and devastation when we are first diagnosed because we are given such radical and drastic treatments as our only option from the professionals; to panic, fear and sadness that consumes us when we go on this journey alone, even with well-meaning family members and friends. it’s not the same as sharing with someone that has gone through simliar experiences or are struggling with the tough decisions we are faced with regarding our diagnosis/treatment. But each person has their own unique story and circumstances so that’s why no one will ever judge when it comes to whatever will work best for you and will gives you peace of mind.
Thank goodness for the internet and googling about this because that’s how I first stumbled upon Donna’s DCIS journey. For me it was a definite ‘life-changer’ equipping me up with more knowledge, alot of resources, and shedding light on alternative treatments for a healthier lifestyle to combat this diagnosis and in preventing invasive cancers; but most importantly supplying me with hope, strength and courage in making the right decision suited for me…and the best bonus of all was the special DCIS sisters that I have bonded with! These factors are all blessings that I’m truly thankful for!
I was very negligent when it came to my own health…you know the Mom that put herself last and almost ignorantly thought nothing bad was going to happen since I HAVE TO BE THE CAREGIVER to others (like now for my aging and frail parents)! Well it caught up with me and reality came knocking on my door because after not having a mammo for several years I got the shocking news that they saw something suspicious and I had mammo guided biopsy. The first oncologist is well renowned for his book on Breast Cancer…Dr. David Chan. And he gave me a glimmer of hope when he said that they are going to be removing the “C” out of DCIS diagnosis and that mine was the slow-moving kind and that it was small in size so he didn’t see any reason for radiation after lumpectomy. I felt my heart leap with joy after hearing that and felt relieved.
But then I was called back to do an MRI and then another call to come back for an MRI biopy. Of course my head was spinning as I couldn’t understand why it went from something not to worry about to having yet another more invasive biopsy! On the day of my biopsy I had a bad experience that left me emotionally scarred because the Radiologist was very insensitive, rude and arrogant and ended up hitting a blood vessel that left me with a huge painful hematoma …but now thinking back on it there was some good that came out of that awlful experience…that’s the reason why I sought out other opinions through the internet and read more about Dr. Silverstein as part of Donna’s resource information. *Before my consultation with him, the previous BS suggested I have DMX so I wouldn’t have to worry about any recurrence…and the PS was trying to convince me to have the newest silicone implants. I was very turned off and depressed and needed to seek a 2nd opinon and thus I called Dr. Silverstein who wasn’t far away from the city I live in and it was well worth the drive and saved me so much aggravation and grief!!!
I felt an immediate connection with Dr. Silverstein, who is very well respected among the world of Oncoloy professionals and is very well renowned…but he is also a kindhearted and humble man and gave me the hope and answer I needed by offering me another option and showed me before and after pictures of lumpectomies and breast conserving surgery so both breasts will be symmetrically matched in size! He is an Oncoplastic Surgeon and if you look at the video on Donna’s resource site he gives a better explanation than I can.
***I have been vascillitating but FINALLY came to the decision to NOT have IORT (Intraoperative radiation therapy) a 1 dose application during surgery. I know that due to my being overweight and postmenopausal having this procedure was recommended to reduce my recurrence, but I decided to choose to live a healthier lifesyle and lose my ‘stress-related’ weight gain…and finally get my life back in order to start taking better care of myself; and I feel more at peace about my decision thus far! I feel God’s peace within me.
After my surgery which is scheduled for Tuesday, August 27th I will also send out the final surgical Pathology Report to Dr. Lagios. Praying that the margins will be wide and praying that I will be at peace at whatever the outcome… and will feel good about my next step and how well I choose to live my life.
I wish that for you NIssy…the peace that you seek in knowing that you are making the right decision that fits your own individual needs and circumstances. I know that you are intelligent, strong and you’re already on the right track making better lifestyle changes and you WILL survive and beat this no matter which route/options you choose! You have God, your loving family and all of your DCIS sisters supporting you all the way!
I wouldn’t be at this point in my life if it weren’t for Donna’s website that I needed in my time of need…and for Sandie who took the time to share her story and all the helpful information that I appreciate learning about; and to Kay and Hopeful32 and others for their courage and bravery in giving us hope for a brighter outcome and future! Donna and Sandie are fighting for our cause and seeking better avenues for the right guidelines, great resources and less invasive or radical treatmentst for DCIS!
Loving Blessings to you dear NIssy in the decision that will work best for you! Know your body…pray and meditate , trust your gut instincts and be at peace little sister!
Love & Blessings in Peace and Healing Light~
Kat Ü
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Sorry was in a rush so I know I made quite a few typing errors with misspellings. Have a blessed day! ~kat
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One more thing…you have to also have a trusting relationship with your Oncologist/BS/PS/RO and others that you will entrust with your treatment. As Donna, Sandie and others have attested to…most insurances do pay for 2nd opinons. I highly recommend it! And if you’re still not satisfied go for as many opinions as you feel comfortable with. I found out that Dr. Chan didn’t take my insurance so was disappointed that he couldn’t be my regular Oncologist unless I was willing to pay out of pocket. But ever so thankful that Dr. Silverstein and Dr. Savalia (PS) did accept it. I trust them both and that is why I am opting for my bilateral breast conserving/lifting surgery. There’s nothing wrong with BMX if that is is a personal choice for some…it just didn’t feel right for me at this time unless I had no other choice or options available. That’s why I am also opting to send out my final reports/slides/etc… to Dr. Michael Lagios ~Breast Cancer Consulting Service to get my VNPI score. *You can send it to him now before surgery too and he will do a phone consultation upon reviewing it.
My surgery is nearing and of course I’m nervous about it and praying for the best outcome without side effects/complications and for clear wide margins. So now it’s wait and see time but I feel good about my choice to have surgery without IORT/rads. I’m rushing around to get the things I need for my family and checking in on my Dad. Love & Blessings to all, Kat Ü
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Thank you so much everyone for all the info. Help stage 1 dcis surgery clear margins…..radiation 20 day. …including booster….. Now …the AI s. on letrozole. 1 week. Horrible. Is it worth it?
So confused.
Rad doc said not really….oncologists of course want the 100 percent statistical survival rate…help….want to be here for my children and fam but I am miserable
Age 58. Good health some ankle issues from earlier sports but all panels very healthy.
Anyone faced with this ?
Thank you so much !
LisA
Ps thank you everyone for all the informAtion and this site.
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Oops I meant infiltrating ductal carcinoma…. Thank you.
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Hi Lisa~
Perhaps you will be able to get more insight and information from Donna and Sandie’s new website: dcisredefined.org
Good luck and Blessings~ Kat Ü
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Hi Kat,
thank you so much for your detailed reply and warm thoughts and wishes..
However I got confused a bit,did you have DCIS in both your breasts??? when did you find out about your diagnosis? because I understand that you are having lumpectomy in both breasts?please correct me if Im wrong..what grade is your DCIS?
are the doctors you mentioned above willing for a consultaltion online???I don’t live in the US,the good thing about here that we pay nothing ,we have a good health care system..but the wait is horrible,,,I was diagnosed on Aug 2nd and my operation is sept 12…that’s a long long wait…days go by like years…I am anticipating a genetic test for BC…in fcat they phoned me today to fill up a questionnaire,,i guess the test will help me a lot deiciding or not on more radical surgery such as(DMX) for the future….IF I tested positive 😦
its hard on me now to opt for mastectomy…the surgeon left me the option and he said”NO WAY” TO DO LUMPECTOMY without radiations…I still don’t want radiations!!! I am not convinced and they say it thicken up the skin of your breast that it becomes so hard to do mamogramms in the future,,,not sure,,,i am really lost in the C world….
I love to come on this blog ,because I love to learn more from ladies who went thru this.. I know everyone is different but it helps….
life is never the same to me..eventhough I read lots of positivity here about DCIS not life threatning,but I have my moments of breakdowns,like yesterday afternoon,I was hysterical and out of control..Thank God only my husband had to watch this and the kids were away….
I can see Kat how nervous you can be …I pray all goes well with you…as moms we want to live as long as we can to be here for our kids,,,my kids are 6 and 8…:(….Every woman deserves to live a happy healthy life….
I appreciate your support and answers ..
Big Hugs to all the DCIS sisters out there…
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Hi Nissy~
I know that it must be a terribly difficult decision for you as it was for me! And that’s why it does help to do the research…please look at all the resources that are available and continue to bond with your DCIS sisters that are going through or have gone through similar circumstances.
Yes…Dr. Lagios does phone consultations *both Donna or Sandie’s resource page has his website/phone number. *Don’t know how much it cost but Sheila the secretary will tell you what you need to send and the rest of the details. Once he receives everything that is needed he calls you back and gives you a 45 minute phone consultation.
Or you can get an Oncotype DX test. After a patient is diagnosed with DCIS, doctors and patients work together to plan the best course of treatment. Along with other pieces of information, the Oncotype DX test can help guide treatment decision-making in women with DCIS once the tumor is removed by surgery.
The test can also help doctors determine the likelihood of DCIS returning or the tumor returning as invasive breast cancer in the same location, also known as local recurrence.
*I have stage 0 DCIS and AHDs Grade 2 Size 5mm Focal Necrosis on right breast only. Instead of double MX with implants I opted to have Oncoplastic surgery (Dr. Melvin Silverstein is BS) where both my breasts will be recontoured to match symmetrically in size after they remove DCIS/AHDs from the right breast. So it’s like getting my breasts lifted (and they will both be smaller than they were before surgery) but at least no implants or expanders!
Since I opted not to have IORT which would have been given during surgery then my risk or what percent of recurrence is questionable at this point until I get my consultation from Dr. Lagios…and if my margins are not wide and my VNPI score is high he may recommend that I have external radiation treatments.
Just continue to have faith, stay strong and pray about it Nissy! The good news is that DCIS is not life-threatening and is treatable; especially when it’s caught in its earliest stage like yours and mine! We’ll be surgery buddies…eldest going first (that will be me) and I’ll give you and the others updates on my progress! So I’ll try and be brave and positive and be praying the same for you during your surgery! God bless you! Love & Blessings~kat Ü
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Sorry not AHDs…I have DCIS and ADHs (atypical ductal hyperplasias)
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one more request from Donna,since shes the one who run this page,I assume she knows my private email address,,,it will be kind to pass it to “Hopeful 32” please so I can communicate with her….thank you.
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Kat…
Thank you again and again…I had a talk today with my husband about consulting with Dr.Lagios and he kinda felt its weird to consult over a phone with a dr from the US,while im surrounded here by doctors,you know men don’t understand really how desperate we are about making the best decision and never have to go thru the same pain later on in life(im so afraid of recurrence or another type of invasive C as its very clear now we are at higher risk)….the thing is we don’t have the Oncotype DX I keep reading about nor that score test they use in the US to determine each individual risks and best treatment options….
I found Dr.Lagios thru some links and I know that I need to pay ahead around 600 usd to get his consultation which I found really expensive but if I will get benefits its really worth the money..however from reading your post ,I can understand that’s the best thing for me is to wait for my surgery to be done first?? so I can learn about my margins? then I can contact with him then? and is this Oncotype DX can be done on the phone too? thru my medical informations that I can send to him via mail?? sounds a bit hard..as he might need my original mamogramms that I don’t even have them in fact,and they are still at the imaging centre or probably my doctor !!!!!
my first mamogramme was done in 2012 when I turned 40 as I expressed my concerns to my family doctor about probably being at high risk of BC ,because my grandmother had it at the age of 80 and my aunt too who is in her 70s now and she s doing well..(overseas) my grandmother didn’t die from her BC…so I was schocked to get it this young…anyways the 2nd mamogramm I did was the one in July 2013 after experiencing pain in my right breast.and sure enough they found the DCIS..the positive thing “I FELT THE PAIN” …!!
I know how anxious you can be but I can tell from you talk that you are in good hands and you are lucky for that…
wishing you the best on Tuesday..and looking forward to hearing from you….
Hugs.
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Nissy, yes please. Share your email and I’ll reach out to you. Mine is also linked to my name..
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Hi Nissy~
I wish I were an expert in this DCIS field but that’s why it’s great that both Donna and Sandie decided to offer all of us some insight with the resources they provided. So far I’ve learned that as long as it’s stage 0 DCIS then it’s already a relief to know it hasn’t become invasive and not rushing to get surgery is okay! However, I am learning that Grades I II and III and other factors involved do need to be carefully considered as far as various options for treatments go; and that is why it’s good to get your 1st, 2nd or 3rd consultations if that would help make your decision-making easier. I totally empathize because I kept vascillating but once I made up my mind I felt at peace and am now ready to move forward!
Only if it’s something you choose to do: you can actually send Dr. Lagios what he needs before your surgery date, because I was just about to do that and would have had to FED EX it to him in a day and he would have called me back upon two days of receiving it to let me know what he recommended in regards to having an IORT or not. At the last minute I decided on my own not to have it and thus I will send him my final surgical report and whatever else he needs after my surgery to see if he still recommends radiation.
You can call Sheila at Dr. Lagios office and she will answer all of your questions (no charge) and tell you what you need to send so you can send it to Dr. Lagios. I’m sure she will give you an approximate time frame that he will call you if you decide that you will be using his consultation service. Are you able to google if anyone in Canada offers the same service/options as mentioned…like Oncotype DX? I think it’s very expensive and I’m not sure if insurance would pay for it…so that’s something to think through.
You’re still young, sound very healthy otherwise, have a loving supportive husband and two (adorable) children that you want to watch grow up to be healthy happy individuals! So definitely you need to make the decision that is the best one for you and that you will be most comfortable with and feel at peace about. While double MX was not a fit for me at this time…I know that there are others that have been fine with it.
That’s what I like about this website that we are all here to support one another no matter what decision we make! There’s really no wrong approach/treatment or answer because it’s a personal choice that we feel is right for us as individuals. We’re just here for the support, resources, friendships made in sharing our DCIS experiences as we gain more knowledge, strength and wisdom…and share our victories!
I wish you peace, calm and enlightment and an abundance of blessings~Kat Ü
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The recent threads here have prompted me to chime in, instead of only “lurking”. At age 59 I was dx-ed with DCIS on 6/16/09. The biopsy was NOT evaluated for ER/PR. And I was told Oncotyping was not appropriate. The ER/PR eventually was evaluated because the surgeon asked for it. It was 9mmx13mm, DCIS, high grade, necrosis, focal. Because I am large breasted I told the surgeon for my lumpectomy to take a huge amount of tissue because I wanted a wide margin report. As it was, there was a dot of DCIS found within the margin tissue, but not at margin. My affected breast is now a little smaller than the contralateral breast, but it started out that way, so, oh well! Because it was high grade I opted to have rads, but did interstitial multicatheter brachytherapy over 5 days, not whole breast. Because I am big breasted, my breast would have been fried beyond saving if I’d had WBR. The balloon catheters most commonly used for breast brachytherapy would not have been effective in reaching the edges of the odd shaped cavity the surgeon created. Wearing 45 catheters protruding through my breast for 9 days was uncomfortable and tiring and not for the faint hearted, but having rads finished in 9 days was awesome. I now carry a permanent seroma that aches sometimes but, oh well. I started Tamoxifen, again afraid of recurrence because of the high grade factor, but it was doing more damage than good (recurrent uterine lining polyps that I am STILL having treated) so I stopped it with the oncologist’s blessing.
I am telling all this so that those of you just beginning this journey will see that there is hope and light at the end of the tunnel. I am 4 years out from treatment and my life is certainly back to normal. I am much more aware of women with short hair growing out from chemo treatments, and of the symbols for “find the cure” charities. However, my life is a little different in that I search out and participate in studies that need breast cancer (DCIS, anyway) survivors. I do this through the Avon/Susan Love Foundation, which, unlike Komen and other charities, helps researchers find participants for the studies looking for the CAUSE of breast cancer (vs finding the cure). Some studies have been questionnaires. The most recent one collected oral DNA swabs and the other collected fluid from the unaffected breast looking for viruses that may cause breast cancer (as the HPV virus causes cervical, anal, and throat cancers). I want the causes to become known so that my granddaughters (as yet unconceived) never to have to worry about this. I am horrified for the younger and younger women being diagnosed with breast cancer. I want more research done on DCIS so that we will know better WHETHER to treat it and HOW to treat it, if necessary. There already have been so many advances in the 4 years since I was diagnosed!
I hope you all make it through your journey with as good a results, both physical and mental/emotional,as possible and go on to help find the CAUSE of breast cancer!!
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Yay Connie! Thank you for sharing your victory with us and thank you for participating in the research for finding the ’cause’ of breast cancer…as I too want the future to be brighter and hopeful with the answers for the cause and cure for DCIS/BC for young women like Nissy and my own daughters… and for the next generations of offsprings! Smiles and Blessings to you~ Kat Ü
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Connie- Thank you so much for sharing your story…bring hope into my heart reading positive stories like yours…I have ups and downs now..I am not the same anymore until I do my surgery and find out…I am against radiations and I keep reading about the side effects and it terrify me..we don’t have Brachytheray here..so I don’t think I have options for “sophisticated therapies”…God knows whats the best for me…my husband tells me to call the BC people here and try to talk to the oncologist/radiologist to ease my worries….
Kat- I wish you all the best on Tuesday…you’re in my thoughts..please keep us posted always…
Hopeful32- if you don’t have a problem,please post your em address here and I can contact you…so glad to hear from you again..
Hugs..
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Hi Nissy, Donna & DCIS sisters~
I did have my surgery yesterday and am at home now doing much better than anticipated. Aside from being a little sore and somewhat swollen and tired…the pain is manageable and I’m grateful for no infection or complications. The BS/PS surgeons were absolutely wonderful and the staff and aftercare at hospital was very organized and efficient and they were all very kind. I have so much to be grateful for and thank all of you for your support and prayers and friendship! I feel blessed to have found this website and I know that the Good Lord led me right here to find the resources and camaraderie I needed in my time of confusion and decision-making. The DCIS/ADHs were removed without any other areas of concern and I had contralateral reconstruction and wearing a compression sports bra. Will go back for followup next week with both BS/PS and will get my final Pathology Report. Of course I’m praying for wide margins and on to a much healthier lifestyle; eating nutritiously; hoping to shed unhealthy weight and to exercise daily…with time to relax and de-stress! Wishing all of you good healthy results…especially with your upcoming surgery Nissy! I hope that you were able to connect personally with Hopeful32 because I know she can relate with you Nissy and give you as much hope as she has been living with! God bless! Love & Blessings, Kat Ü
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Your surgery was with Dr. Silverstein, right? So happy to hear it all went well. 🙂 Donna
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Kat,
So glad to hear that surgery went well and you’re home recovering. Please keep us posted.
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Hi Kat..
I am so glad to hear that you are back home and you sound really that you were very well looked after…!!! so Obviously its a one day surgery and you dont have to stay at the hospital…in my case I would wish to stay at the hospital at least for pain…:(
I hope your pathology report comes really good…I know exactly how you feel …you are such a wonderful lady,,,I will never forget your supportive words on sep 12,my surgery day….
and yes, i just emailed Hopeful32 !!Thanks to Donna who sent us both emails !!
please keep in touch and keep us posted with your results and how you’re doing….
all the best to you and your famlly…
Hugs.
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sorry for the typing errors
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Dear DCIS Sisters~
Thank you again for all of of your well wishes! It’s very comforting to go through this journey with each and every one of my special sisters! Donna, Sandie and Kay were my inspiration and role models who questioned, researched, became their own advocates and stood their ground on what they felt was best for their own DCIS treatment. That’s what gave me the motivation and desire to seek a 2nd opinion and I was so fortunate to get that with Dr. Silverstein (his video about Oncoplastic Surgery was on Donna’s resource website). I feel at peace about my decision to go that route rather than have double mx! Dr. Silverstein along with Dr. Mai and Dr. Savalia (PS) work as a caring and cohesive team and I am thankful to them for doing such a wonderful job! And I will definitely keep all of you updated about my followup appts. But just wanted to give Nissy the heads up in regards to surgery. I thought I was the biggest coward when it comes to pain but somehow it wasn’t as bad or intense for me as I thought it would be. Following the doctor’s instructions and taking xtra strength tylenol versus their perscription one seems to be working to alleviate any discomfort. Oh btw my surgery was at 3:30pm and I did spend a night at the hospital and was released the next morning and felt fine just a little groggy and a little sore. Yay after 48 hrs, I get to take my shower today and will dare to catch a glimpse of my new breasts after surgery for symmetrical matching in size! Sort of weird and exciting at the same time. My personal goal is NOT to have Rads but I will make up my mind once I get my results and send it out to Dr. Lagios for VNPI. *I know that each individual will need to make their own personal choice that feels right for them, but what’s nice is that we each get to share our story and I know I’ve been helped by all of your experiences and appreciate the support shown to each of us as we go through it…it’s a special bond of friendship! This is a website with such a personal caring touch besides the great resouces and information provided! God bless and good luck to all you awesome DCIS sisters for your continued victories, good health, and peace of mind!
Love & Blessings, Kat Ü
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Kat, you are such a bright shining light! Thank you so much for sharing your experiences and gratitude. May you have a speedy recovery and continue to share your journey. Much love and appreciation, Donna
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On the contrary Donna…all of you have been my shining stars! This is such a positive website to be able to share our stories/comments with others! It gives each of us a personal connection with others going through similar situations, a wealth of resources/latest helfpul information, and positive hopeful messages so it’s easier for us to be at peace about making our own personal choice. No judgments ever made…just a whole lot of support and heart (empathy/compassion/concern/hugs/friendships)! Love & Blessings from a truly grateful heart, Kat Ü
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Kat- great to hear about your good news…I hope you wont need any radiations..I appreciate the fact you take time to write down everything and support your DCIS sisters…the countdown for my surgery is starting and I am meeting with my surgeon on Wednesday to discuss a double mastectomy…i personally cannot live in the fear of it coming back.,and I am so against radiations,as you said we are all different ,different personalities,and what works for you might not work for me….especially on the mental and emotional side of it,however I am so happy theres ladies like you on this blog who are able to talk about all the details we want to know about..lots of respect and compassion to every single woman who is fighting or who is newly diagnosed……I will keep you posted..
Hugs.
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Hi Nissy~
I commend you on your brave decision too! I know that if you are at peace then it is the right one for you and fits your needs and circumstances…so of course you have my full support, hugs and prayers sent your way! Are you going to have the extra help available during recovery since you have young children? I’m assuming the surgeons are going to give you a time frame where they want you to refrain from lifting and to not drive for a little while…so I hope that you have others that you can count on during your recuperation phase. I’m sure your wonderful husband will be there to help you from start to finish! You know I will be rooting for you and praying that the surgery will be a complete success and recovery will be quick and smooth! Prayers for your comfort, calm and strength and your family’s well-being and for them to feel at peace! Yes, please keep us posted as we want to know that you are doing well; and others who may make the same choice as you would want to learn from your experience! That’s why Donna set up this website…to learn, share, enlighten, encourage, and support each other in whatever decision we personally choose as individuals! We are all DCIS sisters through thick and thin… Love, Light & Blessings Little Sister~ Kat Ü
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P.S. for Nissy~ I met this very warm-hearted and friendly woman volunteer at the hospital on the day of my surgery. She was kind and empathetic and shared with me that 2 years ago she opted to have a bilateral mx with implants and was happy with her decision since she had no complications associated with it. She looked great too and had this beautiful smile that lit up her whole face and she was very encouraging of my own personal decision/surgery. That’s what makes it so empowering for each of us to have the freedom of choice in the treatment that we each feel is right for us as individuals. We’re just here to share, to care, to empathize, to encourage and to support one another! Love & Blessings in Peace/Complete Healing~ Kat Ü
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Hi Kat..
I want to thank you for all your support..its 4 am here and apparently tonight is a bad night for me,,,as I said I go thru ups and downs,I was so busy getting everything ready for my kids as they start school tomorrow,(I should say in few hours)…I always get nervous the 1st day of their school,so this time is even worse for me..I don’t feel at all being around the parents or talk to anyone..I don’t feel well today…I couldn’t sleep at all..Hopeful32 is an awesome young lady who send me private ems and support me with her kind words and answer all my questions…Thanks to this blog ,I now have kind ladies whom I can open up about my fears,as I said once”only a woman who”ve been there before can feel our pain”….I am meeting on Wednseday with my doctor before the surgery…I want to see him to tell him about my decision,,however im still going for the lumpectomy on sep12, but because the MX requires a plastic surgeon whom I cannot see before weeks minimum I will never delay my lumpectomy..already all this wait is eating me up…I already made my decision..unfortunately I have no help except my husband..as I said my family is all overseas and I cannot even tell my mother,she will litteraly fall sick and wont handle the schock…my husband’s family I don’t talk to them and Im not expecting much from them,,,I am alone…only God and husband will help me go thru this,,I know its going to be hard having 2 small kids to look after and take to school and cook…this is mostly what torture me a lot…I was crying all the tim before dropping those few words here..I feel sometimes I DONT GET IT…I change from hour to hour,my mood,my energy..everything…I am looking to have DIEP FLAP,,would be thankful if anyone here can add with his own experience? I heard Diep Flap is better than implants..eventhough its more extensive… bottom line I DONT want radiations..I know either way it wont be easy on me but I am trying to minimise my chances of getting it back…I ve been having chest pain since 2 days now,,,not sure if its my breast or just muscle pain…im so worried with all this wait !!! its just unbelievable that since my diagnosis til now its been almost 6 weeks !!! isn’t that enough for cancerous cells to spread,,,I think the pain I had today just scared me and that’s why I cannot sleep…rememeber ,initially I didn’t have any lumps and I went to the dr because of a strange pain in my right breast…God knows whats going on..but yes Im scared from all this wait…I might need to hire a helper til I recover once I undergo the double MX…its been so far he worst summer ive ever had in my life,,,I hope after all this wait and pain theres some light for me and for my family….and for my kids”s sake…:'(..
I hope you are feeling better….
Hugs…
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Dear Nissy~
I am praying for you right now that God’s light and love for protection and healing is enveloping you and also that you will feel calmness and be able to sleep and lift up all of your troubles and worries unto the Lord. I know that you are a very brave young woman and also too proud to ask for help…but I think in this case you really should either hire help or maybe see if a church or community non-profit organization has volunteers for that purpose. I think even asking the doctor about the time frame you will need to stay off your feet and rest and if they have referrals might lead you to good reliable help. I’m grateful to my husband and grown daughters for stepping in as needed, but I know that I would have been in the same situation as you if my girls were younger since our relatives live out of state. I do have my parents here now but my Mom has Alzheimer and can help minimally since it’s hard for her to remember things so I don’t want to burden or tax her in any way…and my Dad is physically debilitated plus he has Dementia…so basically they are my two kids for now and I just make sure I have others that will keep their eye on them to make sure they are safe and sound during my recuperation phase.
So that would be my suggestion to you Nissy…to find help if your husband can’t take off that much time from work because it’s very important for you to rest and mend completely! I wish I could have helped you out in your time of need but unfortunately I do not live in Canada…but please know that I’m sending you daily thoughts and prayers for your complete cancer-free diagnosis and no complications with your surgery/healing and a smooth and quick recovery time! I pray for good dependable care for you and your family during your time of healing! Sending you heartfelt prayers, wishes, hugs… and Good luck with your doctor’s appt tomorrow. Please keep us posted! Love & Abundance of Blessings and for you to be filled with peace and light~ Kat Ü
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Dear DCIS Sisters~
***Praise Report!!! Final Pathology Report was given to me today with non-invasive cancer and clear wide margins so I will not need Radiation!!! I am estrogen positive so will consult with an Oncologist regarding hormones but hope to lose the weight and look for alternative medicines. I am so thankful and am truly humbled by God’s mercy and goodness! My heart leaps and weeps for joy! You are all truly a blessing in my life and I thank you so much for your support, encouragement, all your wisdom/knowledge shared, and friendships! My heart and prayers go out to all of you in finding the right answer that brings you the greatest of peace and healthy results!
Prayers for Nissy’s doctor visit to go well today and that she will feel at peace and positive, and on her way to being healthy and cancer-free forever! God bless all of you with riches, honor and a very long quality-filled healthy life! ~Kat Ü
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Heartfelt congratulations, Kat! I know how it feels. I decided to now celebrate my birthday on the day I got my clear path report. It truly felt like being reborn with a new chance for life.
God bless you and everyone going through BC.
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Dear Hopeful32~
Thank you so much! Like your name says…you have given so many of us “hope” with your bright, cheerful and positive attitude! Thank you for sharing in my celebration as I share celebrating your clear Pathology Report given to you also…that is such a fun and unique way to celebrate life…a brand new birthday in which life started fresh and with new and profund meaning for you! Prayers for your continued good health and God’s abundance of blessings to you and all of our DCIS sisters! Love & Blessings, Kat Ü
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Wonderful news! Look into taking DIM. It does the same thing as Tamoxifen- flushes the body of estrogen but naturally. It it an important supplement for breast cancer patients. It worked so well on me, I’ve had to reduce the amount I take.
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Dear Kay,
Could you please tell me more about the DIM. My estrogen level is quite high. I could feel I had hormonal disorder just by feeling crazy (before DCIS), but my gen practitioner never monitored it dismissing my requests. Only after the DCIS diagnose, she’s done the blood work and was scared to see how high was it. It was around 475 close to mid cycle and 127 in general. Last time I had it evaluated a week ago (post mastectomy), the doctor called me worrying about the high levels again, 442 ng/dl.
My diet is super healthy. I consume tons of broccoli, cauliflower and drink kale smoothies almost daily. I thought it estrogen would go down naturally based on such a neat diet, however it is not. I knew of DIM supplements, and have bought one at the Whole Foods to take to an oncologist for opinion. However, he said it is not necessary for me to take it and I returned it to the WF.
My estrogen level worries me. I want to lower it, especially given I was tested BRCA+.
So I’d highly appreciate if you share your knowledge on DIM and, specifically:
– What supplements you are taking and dosage, and at what estrogen level
– Are you aware what is a normal range for estrogen? I am googling and find various numbers. Also, I am a bit confused about the estrogen units of measurement. The ranges available online are in different units than the ng/dl my doctor’s lab releases the results
Thanks much.
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Thank you, Kat, for all the kind words. Life will be only better from now on. God bless you and everyone else.
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Thank you so much Kay! This is what I love about this site…the support and encouragement and now more helpful info for us to learn from. I too would appreciate like Hopeful 32 to know more about DIM supplement and other supplements we can take to stay at a normal healthy estrogen level. Much appreciated. Thank you everyone for your strong bond of sisterhood as we go through each step of our journey to be healthy and cancer-free for life! Hopeful32 have you always eaten so nutritiously and how was your results from the BRCA+…do we need BS or Oncologist to recommend it so we can get insurance to approve it? As you can see I’m still a newbie and learning from all of you! Love & Blessings to all my amazing DCIS Sisters, Kat Ü
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All of the supplements I take, with the exception of my fish oil and some Jarro products, I get from my Clinical Nutritionist and my naturopath MD and they are available only through medical professionals. They are pharma grade and come from manufacturers that meet certain processing criteria, which I found out is quite important with regards to supplements. It is quite an extensive list that is tailored specifically for my body and the way it absorbs nutrients. I will say that in my extensive research on healing with herbs and food, the DIM is widely accepted as highly beneficial just as Vit D3 is. Maybe because there have been medical studies showing a benefit. And Dr’s love scientific studies, lol. With regards to things I take specifically for breast cancer. That would be the DIM, I take DIM Enhanced from Douglas Laboratories, Vitamin D3 5000 mg/day from Metagenics, Carlson’s Fish Oil w/Vit D3 1 Tbs/day and Carlson’s Cod Liver Oil 1 Tbs/day, Vitamin C 1000 mg 2/day from Douglas Labs.
Other supplements that I take for my particular health plan are:
Thymus 2/day and Thymus Activator 1/day from Systemic Formulas
Stress Factors 2/day from BioGenesis
Meta Fem Multi Vitamin 4/day from Thorne Laboratories
Mela Terrain Enzymes 2/day from Systemic Formulas
ROX antioxidant/resvertol 2/day from Systemic Formulas
EPIC antioxidant 2/day from Systemic Formulas
Gabatone for menopausal symptons 2/night from Apex
Methy Protect for homocysteine levels 1/day from Xymogen
Jarro Dophilus (1 billion) 1 day
Jarro MK7 1 day
I also drink 1 tbs day Aloe Vera concentrate from Systemic Formulas in water, and 1 tbs of a health drink in water that I make of apple cider vinegar/garlic/raw honey that is fermented.
My estradiol level was 14.4 pg/ml. And I do use Vagifem now which is not absorbed into the bloodstream but is a topical vaginal estrogen that addresses the bladder/vaginal issues associated with menopause.
I had a hysterectomy/BSO in Dec 2008 and used bioidentical hormone pellets 2003 until the cancer dx in July 2011. One Dr had my estrogen levels way over the normal levels. I looked young, felt good, was super thin without trying….and I was dx with DCIS. His patients had a 50% higher dx of breast cancer than other Drs doing bioidenticals. I feel pretty sure the HRT had something to do with my cancer but I can’t prove that.
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Kay,
You are the best! Thanks so much for sharing your personal supplement protocol! I think it is super important that we choose high quality supplements such as you are doing!!! There are also some quality products from brands which can be purchased on Amazon or Vitacost.com such as: Garden of Life, Carlsons, Jarrow, Udo’s Choice, Life Extension to name a few. These may be more expensive but I look at it as my health insurance plan — and a very good investment! Sometimes even a good brand may not be good for your body. I was taking 4,000 IU of VitD3 (Carlson’s liquid), but my Vit D level was still low. I switched brands and now take 5,000 (Country Life) and got my level up! I am trying to reduce the # of supplements and magnesium stearate (http://articles.mercola.com/sites/articles/archive/2012/06/23/whole-food-supplement-dangers.aspx) and have started taking a Woman’s Multivitamin by Garden of Life called “Vitamin Code” for Women.
Keep up all your great health habits and keep sharing!! Your contributions are so valuable to me and to so many women!
Lots of love,
Donna
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Wonderful news Kat! So thrilled for you!! I wanted to chime in about DIM and I3C (Indole 3 Carbinol) . My naturopathic Dr. advised me to take I3C instead of DIM — can’t remember why. Here is a good article from Life Extension: http://www.lef.org/magazine/mag2006/jan2006_report_i3c_01.htm. Here is my blog post regarding “My Supplement List” https://dcis411.com/2012/05/24/my-supplement-list-whats-yours/. General practitioners and regular MDs are not experts in nutrition and supplements so I would not look to them for guidance. I would advise consulting with a naturopathic, integrative or holistic practitioner. Check hormones through saliva test as well! Also, I was told it is not just the estrogen level that matters, but how it is balanced with progesterone. A good book to read is: What Your Doctor Might NOT Tell You about Breast Cancer: How Hormone Balance Can Help Save Your Life by Dr. John Lee, MD. 🙂 Donna
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Dear Donna and Kay~
Thank you both for such important and very insightful information! I will definitely seek a naturopath or integrative or holistic practitioner and will read the articles you highlighted… and will be buying the book in regards to Hormone Balance by Dr. John Lee. And thank you Kay for being so detailed with your daily regimen. You and Donna and Sandie and Hopeful32 are quite disciplined and definitely on the right track to show medical experts what can be done and accomplished by health~conscious and determined strong women seeking the right sources and reaping the benefits of safer alternatives as preventative measures against BC. I’m just so grateful for all of your help and I know that this website is instumental in helping so~ooo many others to win the fight against BC for each generation to come because you are unselfishly willing to share the information and continuously paying it forward! *It’s been a long hot day but definitely filled with rewards and blessings! Good night everyone with heartfelt thanks again. Love & Blessings to all of you in Staying Strong and Being Healthy~ Kat Ü P.S. Are you okay Nissy? Praying for you too!
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hi kat and all the DCIS sisters on this blog…
So glad to hear about your pathology report !!!! you really need to celebrate,,,!!! that was really fast for you,and you are lucky because my doctor said the report will come out 2 weeks after my lumpectomy…
as I said I had an appointment with him on Wednesday,I expressed my wish to have a DMX in the near future,,when he started being so negative and said that ” we dont do prophylactic mastectomy in Canada,you can go do it in a private hospital in the US or pay for it here.or get a second opinion !!!” he said im rushing into my decision and lets wait for my pathology report after my surgery and for my genetic test….I feel that eveything is “on hold” here while I have a big battle to win and my biggest enemy for mow is TIME !! i know am early stage and DCIS but I am SCARED!!!! and i feel that i want to do the best i can to minimise my chances of getting any form of invasive cancer in the future….doctors and the way they make me wait is driving me crazy..i woke up today with same kind of pain that initially took me to the doctor 2 months ago to find out later I have DCIS !!! how would I know that now waiting for my surgery I dont have something inside growing and invading…!!! I am terrified and having this pain is making me lose it…
anyways , doctor and I agreed to wait for my pathology report and genetic test then decide,,I expressed my wish of not doing radiations but he said i might need it,,however i am really NOT doing it and we agreed that if I want i can do a right mastectomy in the affected breast after my results show,I can always go for right breast mastectomy…as he started seeing how anxious I am,he started being more flexible about my decision….
I dont know what to say…you’re the only people who really understand my frustration and pain.,.doctors dont care this is how I feel with all honesty…
talking about estrogen level,I have a feeling that i have high estrogen levels since a long time just as Hopeful 32 mentionned about all the symptoms…I dont know why no doctor asked for my estrogen level yet !!!! its good to hear cos I will be asking for a test too !!!! honestly I feel like we have to do our personal research and that you cannot relie on doctors to do all the necessary…
so I will be undergoing my lumpectomy on Thursday i will have to go and place a wire first to guide the surgeon for the affected area…sounds complicated and i dont know why they just dont take a large amount of tissue !!!!
i am hoping eveything go fine…with 2 little schoolers in my hands,its so hard to stay focused and relaxed…
Hugs..
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and Hopeful32- I am doing kale juice too that I mix with celery sticks and turmeric root !!(not powder) it taste awful but I have to !!! i sometimes add lemons and apples to it..I bought that Omega 3 juicer(the best juicer they say that doesnt kill the enzymes) …yesterday i had a carrots+ beets juice…i am staying away from meat!!! sometimes i just have organic chicken breast with salad and healthy organic mustard+apple cider vinaigrette…flax seed oil,hemp oil,vit D3,Vit b12,,IRON (as i found out i had anemia just a month before my DCIS)….due to a heavy bleeding from my menstruation…so next step when im done with the breats issues im even considering a hysterectomy….yes im only 41 years old ,i used to think i have a healthy lifestyle when everything is looking to go down hill…..
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Hi Nissy~
I’m sorry I didn’t check my email yesterday because I didn’t realize how tired I was after I got the ‘ok’ to drive that I went full steam ahead and started running errands but then exhausted myself! lol But I’m so glad to hear from you!
Being patient and calm while going through it is so much easier said than done!!! I along with our other DCIS sisters went through the same process of waiting and feeling anxious because we wanted to know what the reports say…but truthfully what got me through this is my faith in God, and I kept reading scriptures that focused on staying strong, having faith and trust in God’s will and to basically stay positive! He took away my fears and sustained me!
I did think about the worst case scenario and decided to have backup options prepared but again with a more positive and hopeful mindset because I knew that DCIS is treatable and curable. It is harder for you because you have such a young family to care for and I know you are looking at the long haul and wanting to stay healthy for them…and so far you have! Look at you…you are completely changing your diet around 100 percent! I’m so in awe and proud of you for applying it to your life and being so determined to do the best you can from now on! You’re a very courageous and strong woman Nissy!!!
Ever so thankful for the all strength, support, hope and encouragement I received from Donna’s and Sandie’s website and the wonderful women I met; each sharing their own personal journey (You, Donna, Sandie, Kay, Hopeful32, Connie) was so enlightening, inspirational, and motivational for me! Being well informed, having support and staying positive/stress-free is so important! Also to go with your God given gut instincts if you want a 2nd opinion or feel something isn’t right for!!!
I just ordered Dr. John Lee’s book that Donna and Sandie have on their resource page on. I too want to change my lifestyle to be healthier and make positive changes. I tend to take baby steps but at least it’s going forward and not backwards! Next step is to look for a naturopathic doctor to assess my nutritional guidelines.
Continued prayers for you Nissy to make the best decision possible for you that you are at peace with and that you will get the full cooperation and approval from your medical professionals! *The wire placement is when you are awake…they localize it so you don’t feel the pain but they put a needle in and thread it to place the metal marker. It comes out when you have surgery. Sort of weird but that’s what guides them during surgery. Please keep us posted and may God watch over and bless you and your family daily! Hugs & Blessings galore!!!
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10
Love & Blessings for Perfect Health for all of my Amazing DCIS Sisters~
Kat Ü
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Thank you Kat….I hope that you are recovering and feeling better..you sound really good and thats wonderful…and your positivity is very contagious:) 2 more days to go for me.. I am so nervous but same time excited about getting rid of all the “bad stuff” that wants to ruin my life…if it was for me i would ask the doctore to take all my breast off..but still early to decide….i should take it step by step but again the time factor is scary in the cancer world,and sure its hard when you have 2 little kids ,my older one is a boy hes only 8,he is so attached to me and very sensitive and since I was diagnosed he feels theres something wrong ,but of course hes too young to know,,he saw me crying today and came close and asked me ..i told him mommy wants to be good after the operation and i taught him to ask God for “mommy to feel better
i know children”s prayers are so special and i enjoyed hearing him repeating my prayer with his cute little voice……..please keep writing your poistive words,it sure makes a difference for many ladies here…and yes,God’s presence in our lives is sure very helpful and empowering…..Thank you…..
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I am praying daily for you little sister Nissy! Awwww….your son sounds so precious, loving and sweet!!! And we know that he prays so sincerely and innocently from his heart… and God will hear and answer him because of how much he loves and adores his precious Mommy! *The main thing is for you to get the rest you need before and after your surgery!
Try not to be too anxious… just close your eyes, take deep breaths as you start to envision what you want to see happen…by focusing on that so you can stay in a relaxed and calm state of mind. Besides the healthy eating, the exercising, and getting enough rest…have confidence and truly believe in the good results you will receive; and when you pray and meditate keep visualizing that the cancer cells are completely gone and eradicated without you having to do radiation! “This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” Joshua 1:9
Love & Hugs & Blessings in Prayers for your comfort, successful surgery, quick recovery, great results and being cancer-free forever~ Kat Ü *Please keep us posted Nissy as we await your good news!
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Kat…you put tears in my eyes when I read your post…I wish you were my friend in real life here..you sound like a wonderful lady…I can tell that you were so confident and positive and hopeful before undergoing your surgery..I am trying my best to be like you…sometimes I fail,its been ups and downs since August 2nd,and its taking a toll on our little family..having a history of anxiety,its hard to be relaxed,But I am trying…a lovely lady that I met at the park once while my kids were playing,and knew about my story,(as I was so disappointed from everyone around that I know and who is supposed to be more supportive but everyone ran away of course) this lady that I just met talked to to me a lot about the power of mind and what the power we have over our body when we re in a good mindset…she even told me about imagining playing xbox trying to shoot all the cancer cells,,,and sometimes I do it as you said close my eyes and focus…
one more day to go ….as I said nervous and excited for this nightmare to end…
keep me in your thoughts as you always do Lovely Kat..
I am SO grateful for you taking time to write these supportive words…you never told us,,now that you don’t need radiation (Thank God) what will be your follow up routine? are you on any medication? are you worried that (God forbidden) it might recur or no?…
I will try to get back to you tomorrow…otherwise I will keep you posted after I am donw my surgery God’s willing…
Hugs..
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Dear Sweet Nissy~
You sound so much better and I know that you will do great tomorrow and everything will turn out terrific because of your newfound determination and inner strength! You know you are surrounded by prayers and protected by your guardian angels…and I bet the lady you met at the park was one of those angels as she instilled in you to believe by envisioning the cancer cells being demolished like your xbox game!!! WAY TO GO!!!
Thank you…you are so kind! The reason why I can offer you words of encouragement is because I too felt as you did…afraid, anxious, nervous and depressed! So when I got on Donna’s website, I felt as if God led me here and that’s where I received such helpful information from Donna and all of our DCIS sisters; and the resources were of great help to me because prior to that I really didn’t have a clue as to what all of my options were!
But one thing I did always have is my faith in God. I know that each of us faces our fair share of life’s ups and downs…and we can get either choose to stay angry or we can feel hopeless and want to give up…OR we can stay strong, positive and give it our best effort and be resilient and keep bouncing back even if things don’t always go according to what we idealize! BUT, it can also propel us to work even harder to improve our lives and have results that are even better than ever!
I truly believe in the power of prayers, miracles and that if we put our mind to doing what is right we will get good results…so it’s important to stay positive, envision it and then empower ourselves to achieve our goals with God’s help and guidance!
And you know that we are already friends Nissy and I hope we can stay in contact for years to come to keep everyone updated on each of our progress/success! There are some good things that come out of every situation and in this case we all share a common thread here which started with our DCIS, but the bonus is that we care about one another and this site is designed for that human touch…not just for robotic information to appear…but to have real women (and men too) in similar circumstances from all walks of life, all ages, ethnicities, religions or non-religion to come together and offer support, compassion, empathy and encouragement as we each go through our journey with DCIS. We each have our own life story that will be part of our legacy…and the nice thing we can say is that we will beat this and live cancer-free because of the knowlege we have attained and our determination to live a health-conscious lifestyle!
As for me…I am still healing. My scars are ugly and I may even have a slight infection but no fever just red and itchy, slight discharge, and sensitive…so I will see if PS would want to see it sometime this week. However, I am still counting my blessings and feel good about my decision as far as my surgery and No rads go. I go back in 6 months for mammogram and I’m sure I will be holding my breath each time I go for breast exams…however I’m going to stay positive and do my fair share of taking much better care of my health and go from there. I am realistic enough to make sure I continue to do research as I’m doing now with Donna and Sandie’s new website “dcisredefined” and make sure I have all of my options avail to me.
I want you to get your rest and when you feel up to it please post how you are doing! Prayers for you to feel good, relaxed and relieved… but please take it easy and don’t try and do too much! Follow doctor’s orders and let your kind husband pamper you and your adorable son help you out so you can rest! Much Hugs & Love & Blessings for a Speedy Recovery Nissy~ Kat Ü
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Hi to All,especially Kat and Hopeful32( I cannot check your private ems Hopeful32 as Iam away from the big computer downstairs where I get my main ems) so I thought I will keep you posted on this blog..
I had my lumpectomy done on Thursday…believe it or not I am completely fine from the incision,a little bit sore that doesn’t even require any pain killer,but I was dismissed the same day in the afternoon at 3pm(my operation was at 10 am)…I had general anesthesia and was nauseous and just dizzy and imbalanced,,,they sent me straight home..after just few hours from my surgery,,in the evening when I was home I started being more nauseous with terrible migraines that felt like having a brain stroke..I was shaking all the time…towards midnight this is what it got the worst that I couldn’t handle it and I had to go to the emergency!!! as you call her”My angel” Kat,yes that lady that I met at the park,she came at 1 am to my house to stay with my sleeping kids so I don’t have to pack them with me and I went to the emergency where they did an ECG,blood work and gave me Tylenol 3 and some anti anxiety medicine and this is when I started feeling better and by the morning I was asleep and came back home at 6 am, my kids were getting ready for school and the awesome lady who sat them for me left to her house and I gave up to an awesome long sleep til my kids came back from school..i was exhausted and asleep most of the day, and I went to sleep again at 8 pm yesterday with the help of Tylenol 3 again…and slept for 12 hours !!!!!!!!!!!!! today I feel much better…..the incision as I said doesn’t hurt,i just feel weak….I have to see my doctor in 2 weeks for the pathology..praying everything will be fine….what worry me a lot now is the “general anesthesia”,,for me it was complete HELL !!! I don’t know how I am supposed to go for more invasive surgery in the future (if I decide on doing it) with my low tolerance for general anesthesia apparently….
those 2 days were obviously not the best time of my life but after 2 months almost of wait and anxiety,i am relieved the operation is done…now only God knows whats the future hides ,for now I have to pray that the pathology comes out good….I want to go slow and calm down before taking any other decisions…I sent before my OR the questionnaire to the genetic clinic here to see if I am eligible for a BRCA genetic test…I am doing everything I can…booked an appointment with a psychologist next week as I think I need to see one so bad to maintain some kind of sanity,,lots happened lately and its affecting my emotional and mental state a lot…
that’s my news for now,,today is gorgeous outside, I think about being out and enjoy some sun..
Thank you so much Kat for your prayers and thoughts….
Big Hugs my dear DCIS sisters…
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Dear Nissy~
I’m so glad to hear from you and that the biopsy went well for you! I’m also very sorry that you’re reactions to the anesthesia was agonizing! That must have been frighening to have those horrific symptoms and not know what was causing it. But the main thing is that you were checked out, got that wonderful ‘angel’ to help you so you didn’t have to worry about the children…and that you were able to sleep and rest up. Sleep is the best healer of the body next to God. I will continue to pray that you feel better and stronger each day and the anesthesia will leave your body completely and you will not have the remnants of the effects from it. Just take it easy dear sister…because although I count my blessings that I was not affected by the anesthesia, I did a big ‘no-no’ by lifting when I shouldn’t have (I have 2 medium size dogs) and caused myself an infection. That’s why I too was tired yesterday after being on antibiotics for the 2nd day that I didn’t even go on the computer.
So BIG lesson learned is follow the doctor’s orders, if your body doesn’t feel right then seek medical attention pronto, and from here on basically aim for recovery and healing by continuing to focus on those positive thoughts and images of what you desire! The main thing is that they got all the pre-cancer cells out and that is why you start off with a clean plate and fresh start! So from now on I’m praying for the best Pathology results for you dear Nissy!!! That’s the focus now along with your complete healing and recovery.
You’re so awesome and strong in being so honest and real in sharing your experience! Thank you sister for being you…please get well and keep posting! We’re all here for you and love you…and we’re rooting for you!
Big… big hugs to you for comfort, love and support, and prayers for your well-being, good results, speedy recovery and an abundance of blessings for you~ Kat Ü
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Hi Donna & Nissy~
Again thank you so much Donna for having this website where we can be here for one another as we each go through our own DCIS journey! We all have learned so much from one another and continue to do so.
I know that Donna and Sandie have been busy working on and updating their newest website “dcisredefined” which is great too! I did order Dr. John Lee’s books and it’s been very insightful. Thank you for having those books on the resource page. Nissy you might also want to order “Mind over Medicine” by Dr. Lisa Rankin…it does talk about the positive thoughts to heal thyself! I think you will like it and it is also on the same resource page. So much to take in and yet so much hope and options out there with alternative, holistic and newer medical technologies!
*BTW Nissy…if you ever need to contact me personally I don’t mind Donna giving you my personal email address too.
Thank you all for giving each of us support, love and encouragement as we become… and remain cancer-free forever!!! This is definitely a healing website!
Love, Light, Peace and Blessings to all of my Beautiful DCIS sisters~ Kat Ü
P.S. Nissy I did have a little nausea and dizzyness and stomach cramping one afternoon after surgery…again I found that being hydrated and resting was most important to recovery. Did they have you on colace prior to surgery and after? The anesthesia can cause some constipation so I’m glad that was one of the tips I got prior to surgery. Arnica was also recommended prior and until I finish it…it is suppose to stop swelling and is from health food store. I think I would be healing on schedule but got this weird notion that I was “superwoman” and decided to lift a little daily without realizing I was causing more damage and an infection…so now it will take a little longer to heal but I’m ever so thankful that it wasn’t worse and that I’m still moving forward! Praise the Lord for all good things for all of us! Get well and be at peace little sister! Prayers daily for you! ~Kat Ü
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Hi Kat..My wonderful friend and DCIS sister…
you don’t know how much I find relief in your kind warm honest words that come from the heart..I am sorry to hear about the infection,i am sure you told your doctor? i am not taking Tylenol 3 anymore as my pain in not this bad and to avoid constipation from codeine too and sleepiness…I think I can handle the pain,but I am still feeling lost and confused and thought I would feel better after the operation..I still have those dark moments,and not just because I am still not sure of the pathology but because I am still not sure of the right decision to make especially that a double mastectomy is one of the decision I would love to make even the pathology is negative, I think a lot about the future not only the 2 weeks from now,i am still fearful if I don’t make the right decision what would happen,having 2 little kids is not helping me focus and sometimes when I look at them my heart is just broken and I ask myself would I be here for long as I wish for them!!??
I don’t think I will recover emotionally from what happened,,apparently…we went out for dinner yesterday and went back home sad,,i need to say that I don’t talk to my husbands family since few years now but I expected they will come visit and show support…but nothing happened…this made me feel so sad ..my kids are feelin everything and especially my older one whos 8,he even lost his appetite yesterday at the dinner..
my husband says I need to stay strong because its affecting our son.but easier said than done..I don’t know if I told you that I am seeing a psychologist on Tuesday…I have to…thanks for giving me the name of these books ,I need to check them out,, I heard about a book called”dying to be me”,,heard its a very good book also…
Kat- I have no problem Donna passing my private em address,that would be so nice, I am sure that hopeful32 sent me something few days ago as my husband receive them on his phone but I couldn’t check it because I am away from the computer in the basement now…
I want to thank you for your prayers and support..I think the difference between us that you get immediat wonderful support from family and friends around you.and your kids are older which make things easier…the emotional support is very important,especially in my kind of character as Hopeful32 once mentioned..not everyone handles hardships the same….
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Dear Nissy~
I think you’re doing all the right things so you should be proud and feel good about yourself because you’re doing whatever it takes to be healthy/strong and to be there for your own family!
We all have our past history or baggage that we carry with us in life…but sometimes ‘forgiving’ is the only way we can truly be free…whether it’s forgiving others that have wronged or hurt us or forgiving oneself! It doesn’t mean that we aren’t human and can’t feel the pain, the hurt, disappointment, anger and frustration from what life hands us and be upset at the people that may not react or reciprocate the way we would like.
But being older now, I have learned a few valuable lessons that I can pass on to you so you won’t have to go through so much heartaches and disappointments. #1. I learned to not expect too much from others and to basically accept them as they are; because it works both ways that they cannot expect more from me than what I am capable of doing or being…and whatever I choose to give comes freely from my heart. That way once that is understood then it’s so easy to give freely without expectations and to receive it too without having high expectations of others.
#2. When life gives you lemons, it’s true you should make lemonade or drink it with hot water to detox or use it to clean with and make things brights and smell citrusy! In other words… even if things in our life look and taste sour or seem useless…there’s so much more we can truly do with it to make it better or to have some purpose or make use of it in our lives! In other words…turn it around by seeing the glass as half full versus half empty!
But we both know that it is easier said than done or I would be this “Ms. Slim & Trim” by now! Everything takes time, hard work, determination and reinforcement…always remember to give yourself a big pat on the back, take plenty of hugs from your husband and adorable children, reach out to famly and friends for the support, love and encouragement that you need! You know I and the rest of your DCIS sisters are always going to be here for you Nissy!!!
You will always have the right to vascillate, to hesitate and to go for 2nd, 3rd or 4th opinions because it’s your own body and health that is most important! Going to see the therapist is wonderful Nissy! I think it will help you to feel better to vent and let it all out and have a neutral person who is trained in that field to offer her/his professional advice.
Thank you again… I feel I”m on my way to being infection-free! The antibiotics seem to be working as the PS said, but he will keep me on it a little longer as I meet with him again next Monday. I’ve been good though about not lifting! My daughter went with me to the vet this morning and took care of our dogs for me…and on Wednesday I’ve already arranged transportation for my Dad at his assisted living to take him to his doctor’s appt via the wheelchair and I simply show up with my Mom at his doctor’s office to go in with him and get is prognosis/treatment without ever having to do any lifting!
See…I’ve learned to delegate or to ask for help as needed because I do want to get well and be on the road to complete recovery and healing! Life is too precious and we need to keep moving forward with more hope, promise and VICTORY!!!
Stay true, positive and always hopeful Little Sister Nissy! We all love you and send you big hugs and look forward to hearing about your progress and success as you reach each milestone towards your complete healing and recovery and VICTORY from BC/DCIS!!! So happy that you are pain-free and recuperated from your surgery. May God continue to bless you on your journey of a very long, healthy and fulfilled life…
Love & Blessings to all our Beautiful and kindred DCIS sisters~
Kat Ü
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I dont know what to say,after i wrote almost 20 lines!!! all gone with the wind,,i dont know what button i pushed…i am so frustrated now and cannot type again…sorry !!!!
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Dear Nissy~
I hope you are doing well,. I sent you an email awhile ago and don’t know if you received it…hope I didn’t send it to a wrong email address. But you know that you continue to be in my thoughts and prayers for your well-being and peace of mind!
As I said I am trying to follow what I have learned and at times it can be difficult to see life as half full and stay positive and upbeat…but I do try and count my blessings even when I’m going through some trials and challenges.
I’m about 95 percent free of the infection (hopefully) but I go again to PS next Monday to be sure that he feels it is and that he doesn’t recommend seeing an infectious disease doctor. That was getting me discouraged wondering if my infection would go away or not and if I can resume on with my normal routine. But in the meantime I had to take my Dad to ER and visited him in hospital for 5 days until he was discharged. He now has home health nurse and PT showing up to see if he will make progress but his Dementia is getting worse so he’s not always cooperate. Exactly 1 week later I recently had to take my Mom (who has Alzheimer) to ER for heart arrythmia and a dangerously high bp. So as stressful as it’s gotten lately…I’m trying to see the bright side of things. That somehow I am gaining back my strength and am able to care for them. Going to ER isn’t fun but at least they hustle and give attention and great care to my parents and others that show up in emergency! And all I can do is continue to care for them…and myself and pray for the best!
I think that’s part of our life’s lessons…we get a chance to learn and to improve and even when we are human and fall apart at the seams, we can pick ourselves up and start all over again! I still struggle and have my own fear and doubts…but again I try and push forward and somehow get the will and the power to forge ahead by being thankful for the good people and things that comes out of every situation!
Nissy ~I pray for your wellness and that you are in a good place right now! God bless and please keep us posted! Love & Blessings Always, Kat Ü
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Hi Kat,
I am sorry to hear about all what you had to go thru, and I hope your mom and dad are feeling better,, I don’t know why all the bad stuff happen in a chain as we keep asking “why” and we get discouraged but as you said the will of survive is much stronger than any critical situation we go thru…
of course I did my lumpectomy as you know on sep 12, I am still recovering,the pathology came out with clear margins. they took 4 cm of dcis, grade 1 or 2,although the very first biopsy said im grade 3,so that’s my good news ,however I told my surgeon im still not comfortable going for radiations.. and I still consider bilateral constructive mastectomy…the surgeon is totally refusing a reconstructive mastectomy on the left side as he think I don’t need it and said if I was his wife he would only send me to radiations…I went to my family doctor so he can help me decide and he told me the same ..”if I was his wife he would send me to radiations and wont recommend any major surgery unless my genetic test “brca” come out positive”…
I have appointment with the oncologist on Thursday the 10…I am waiting to see what he is going to say…its getting so overwhelming here as well with kids and their schools and needs ,you can imagine a boy of 8 with anxiety and a girl of 6 who doesn’t behave well how life can be tough…that’s why I had hard time getting for a long time on a computer,as I mentioned my husband works from home and all the computes are in his office during the day time…
I don’t know what to say..i felt a bit up the start of the week then everything went down the hill since Wednesday…I am attending psychology and support group that I found it wonderful,,,ladies with BC come and talk and open up about their journey,,was there on Thursday and I was the youngest and it helped me a lot crying and sharing my story with those awesome ladies…
I need to ask you ,I still feel tension and heaviness and sensitivity in the nipple area…very very sensitive ,is this normal? apparently it really takes long to heal from lumpectomy!!! I did a c/section and recovered faster….
please keep in touch too as I ask Hopeful32 to let us know about her news as well….
thank you…
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btw I need to say that they really should consider ladies with DCIS in a different group of BC,i find it so discouraging being around ladies with advanced BC with chemotherapy and really advanced type of cancer that is really depressing when you attend these groups..and I feel that everyone else look at you as you didn’t even go thru chemo and probably they think youre so lucky and I didn’t find it fair neither for me or for them..i wonder if you agree on this point…
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Hi Nissy~
So great to hear from you! I feel for you as you must be exhausted from putting on your ‘mommy/wife’ hat and then trying to find time to handle your emotional roller coaster ride in making the best decision for you! So proud of you for looking for a support group that you can share your experiences with…but I do agree with you that it would be more helpful if you could find others like Hopeful32 and the rest of us DCIS sisters with early stage diagnosis that prefer not to have radiation; especially if we have other options to choose from (no rads/active surveillance, mx or no mx, etc..).
Nissy… did you have a chance to go on Donna and Sandie’s new site (DCISREDEFINED) and read the latest info Donna just shared with us about “Thinking Green versus Pink” in re: DCIS overdiagnosis? There are more comments on that one and other ladies that agree and are in similar situation to yours and mine.
Please don’t feel guilty that you are more fortunate than some of the others in the BC support group…I know that they had it pretty tough in having to go through with chemo/rads combined…but again I’m sure they realize that they had more advanced stage cancer than what you are diagnosed with…and for them to survive it was necessary for them to go that route! We can be happy for them now if they have fully recovered and are doing well and remain cancer-free!
Believe me…after surgery/recovery phase I felt all sorts of pain from my nipple and breast area…sometimes sharp, sometimes shrilly, and very sensitive! I know some of it was from my infection and the other is considered normal from the healing process because it can be itchy too and feels sort of like the skin is trying to re~stretch or tighten. When I moved a certain way it felt like a tug or pulled muscle at times. Because I chose to do have breast reduction/lift on the left breast to match the right one…I had to endure the pain on both breasts (but manageable without pain meds)…in fact to my surprise I feel the infection took longer to clear up on the left breast rather than the one that they took the DCIS/ADH from. My surgery was August 27th and it is now October 5th…I would say that my infection feels like it is just about gone now…and most of the intense/shrilly pain has subsided but I can get occasional tweaks here and there…and the redness from infection is no longer there so I think the road to complete recovery is around the bend! YAY!!!
Even with these type of procedures as lucky and blessed that we are…it still takes time to heal and mend…but do go with your gut instinct if something really and truly doesn’t feel right or hasn’t gotten better! I saw the PS every week since I suspected I had an infection and when I saw him, he confirmed it! But the good news is that the last time I saw him was 2 weeks ago so he felt it was looking much better and that is why when I see him on Monday I think he will be pleased that there is definitely a noticeable improvement because my scars are not as hideous as before!
Keep the faith, stay strong little sister and we will continue to support and encourage you because you are a survivor and you will choose what’s best for you! One of these days, DCIS will be easily treatable (without harsh treatments) and prevented with proper nutrition/supplements…exercise, relaxation therapy as our only necessary prescripions!
God bless and keep you strong, healthy and guided to the right surgeon/oncologist that you will be in agreement with!
Love & Blessings for Your wellness & peace of mind, body and soul~
Kat Ü
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I also wanted to add that I pray for the same prescription for those that have any form of low/itermediate or advance stage (invasive) cancers or pre-cancer cells… and for the future generation that with proper clean/organic/green nutrition/supplements, exercise/stress release and meditation practices that it will be enough prevention against cancer from ever developing!
Love & Blessings to the future healthy generation~ kat Ü
P.S. Having drainage or discharge after surgery seemed normal but I noticed that it wasn’t tapering off and there was blood or a yellowish tinge so that is why I suspected infection. I used neosporin and gauze after I showered morning and night and I also used bio oil to prevent dry skin and help heal the scars. So far it seems to be working although I tend to scar easily and it takes a long time for it to fade.
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hi Kat…
I was just on DCISREFINED website…the new website of Donna,,it made me happy reading the page”ovewhelemed and fears”….very intresting website indeed to ease our pain as DCIS patients..i will look more into this website…but here s my question “does DCIS really doesn’t get invasive?? so why they do say that in an advanced stage it can break through the wall of the milk ducts and invade the breast tissue..i am so confused…is DCIS really a non life threatning cancer….I think I am back to square 1 where I used to always ask myself the same questions….I am seeing as I said the oncologist on Thursday,good thing I found someone to sit the kids so I can be able to go there with my husband..i am so afraid to be pushed into something I don’t need if DCIS is really overdiagnosed!!! I am eating clean since my diagnosis (august) and lost 9 kgs from both eating healthy and stress…I cannot eliminate the stress with 2 little kids…I fear radiations as I think my body is really being detoxified and I feel it after 2 months…so why should I harm myself with radiations if I really don’t need them!!!! I know I ask this question million times but who can help me find the answers !!!!
very confused…Kat I hope you are feeling better,,,after 3 weeks my breast is so sensitive especially the nipple…and I see it changing forms and looking weird sometimes after I take my bra off when the day is over…forgot to tell you that I received your personal email a while ago and thank you very much and thanks to Donna as well but as im very overwhelemed with everything Im losing lots of focus with 2 kids fill time school and lots of responsibility….
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I want to thank you Kat for including all the details of your healing in your beautiful comments,,sure helps many of us when you share…really feels that we are not alone with an awesome sister like you….
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Hi Nissy~
Ah…thank you! I think one of my characteristics is the fact that I am so transparent…or so I’ve been told. In other words I really like to be open, real, and honest about our experiences because it helps us to learn from it and hopefully help others too as they go through it. I’m trying to understand more about DCIS and with Donna and Sandie’s website and the resources they provide for us…I am learning more about it and think I have a better grasp than when I originally started out on this journey with feelings of fear, confusion, shock and being overwhelmed!
Today, I saw on the internet home page about this being “Breast Cancer Awareness” week and how we all can be supportive (22 ways) to those going through their diagnosis/treatment and when I read each one I totally agreed with… to be a good listener; to get in touch with others that are going through similar situations; doing nice things like help with young children while the mom gets to go for treatment or have time to rest; dropping off food or groceries,gifts; sending emails, cards of encouragment, etc…
I’ll be praying for you to get the answers and peace you seek when you see your Oncologist. Please make sure you write all of your questions and concerns so you can talk to the Oncologist about it on Thursday with your husband. If you are still in doubt, perhaps you might want to send Dr. Lagios your Pathology Report and he will call you to talk to you over the phone regarding your options. *That’s what I was going to do if my Pathology Report came back differently. I knew I didn’t want to have radiation either so wanted to do whatever it took to first before I would ever consent to having it.
Congratulations Nissy for sticking with the healthy ‘whole foods’ and ‘green drinks’ detox diet and for being successful at losing some weight!!! I’m sure you feel so much better and have a lot more energy too. And please don’t worry, of course I understand that you are a young busy mother/wife who is trying to keep it together and stay healthy so you can enjoy your bright future together as a family! I’m rooting for you Sis!!!
I guess it’s too soon for us to expect our breasts to feel normal…maybe in 3 to 4 months or longer…we will see that it feels okay again…but I know realistically they are not ever going to be the way they were before surgery…but since I had 2 c-sections many years ago and look back and realize that the end results were the birth of my two beautiful daughters…then I wear them proudly and notice that even though the scars are still there…they have faded greatly over time! So that’s the same attitude I hope to have in regards to my breast surgery scars…got rid of something that was considered pre-cancerous and now I’m equipped with more knowledge and resources to be healthier and to prevent a recurrence of any type of pre or cancer! That’s the legacy we can leave behind…we won the DCIS battle and lived a happier, healthier…longevity after! Ü
Please keep us posted and know that you are always in my prayers! God bless and good luck with your final decision that will give you the greatest sense of peace! Love & Blessings for Your Excellent Prognosis/Health~Kat Ü
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Hi,
I have just had surgery to remove high grade dcis with microinvasion. Is there anyone out there who like me is trying to avoid rads/ has avoided rads with high grade dcis? I am still unclear as to whether recurrence of dcis can only be in the form of more dcis, or whether it is possible to have recurrence of something invasive without it going through the dcis stage first? I have read / been given differing responses to this question so far . If the former is true, I would feel a lot more confident refusing rads.
Warmest regards to you all….
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Hi Paula,
I would suggest consulting with Dr. Lagios for a 2nd opinion consultation: http://www.breastcancerconsultdr.com/index.html
Dr. Lagios would be the best resource for most accurately answering your question and giving you specific and valuable information based on your actual DCIS pathology. Getting general opinions will not be too helpful and could be misleading. The more you know about your actual situation, the better you will be able to make a decision for rads or not. My score was an 8 on the VNPI according to Dr. Lagios and radiation or more surgery for better margins was recommended, but I decided against both. Dr. Lagios downgraded my DCIS from intermediate grade to low grade — this gave me great peace of mind and reinforced my decision. Definitely worth the $. I hope you can find peace in whatever decision you make. 🙂 Donna
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Hi Donna ,
Thank you so much for your response.
I am actually in London , but I will enquire re the possibility of transferring pathology slides
and a telephone consultation.
I feel like whatever decision I make I will be going against someone’s advice, and the weight of knowing I have to make a decision is one of the hardest things about this situation.
Every fibre of my being is telling me not to do rads, and certain members of my family are upset and angry that I am even considering saying no to them.
I don’t want to be reckless, or to make a decision based on fear, but I honestly feel that I want to take the natural approach with close monitoring, but I doubt that my consultant will support me when I go to discuss the results of my op pathology on Friday as she appears to be quite conventional in her approach.
I know that to a certain extent I need to ‘feel’ my way through this, but I’m not sure if I would have the courage to go against my consultants advice.
I have a wonderful and very experienced naturopath who would support me in my decision, although she did in my first consultation ask if I would consider a mastectomy when she learned that my mother died from BC.
So I will hope for the best on Friday, and try not to think too hard about what decisions I may have to make until and unless I have to make them.
I am a single parent of a three year old, so I am desperate to make the right decision for her.
Thanks for listening x
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Hey Paula. Your post is 3 years old where you ask about high grade DCIS with microinvasion, so I understand if you do not respond to my reply. Was your microinvasion detectable on imaging before surgery or only after surgery? What have you had done since your 2013 post? I have a DCIS lesion of 2.8cm but with some “suspicious” calcs and am contemplating my options. THANKS!
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Hello everyone ,especially Lovely Kat….
I met with the oncologist on thursday and he sat for 2 whole hours explaining my pathology report and answering all my questions(unlike the surgeon),he was so kid to me and i felt more comfortable talking to him than the surgeon ,after i was diagnosed with DCIS at the first biposy grade 3..apparently the surgical pathology report showed a lower grade 1 and 2 ..that made me feel happy of course knowing its less agressive than grade 3…its 4 cm and its estrogen positive which makes my prognosis better….he offered me doing more study on the removed tissue to see if im hr2 positive or negative..i know things here in canada are different ..but what rassure me that we have one of the best cancer centres in the world…and day after day i am realising this and i feel lucky to be looked after by a wonderful team here…so at the end we agreed that radiations is the best for me..of course the oncologist never told me to go with no radiations bcos my affected tissu was 4 cm,,he said if you dont want radiations,you need to decide for mastectomy….being now more calm and quiet about the whole cancer thing,i am deciding for radiations…after i was so scared of going for radiations i think mastectomy would be scary as well and my oncologist seemed to be so convincing…..Paula,as Donna said you need to ask a specialist,of course sharing stories and experiences is very beneficial,but we are all different,eventhough we share the same disease,but you can only decide for yourself,you and with the help of a specialist..dont opt for something unless you believe its the right thing for you ..after i left the oncologist clinic i felt that radiations in my choice…..life is full of risks every day..if we have to fear everything and the side effects that wont have a good outcome from the treatment we choose for..after my lumpectomy i had a dilemma between mastectomy and radiations and i drove myself crazy….now i think i reached some sort of peace knowing i will go for radiations in novembre….i want to be done from this nightmare….til i get my brca genetic test done,,this is all what i can do for now..i need to deal with dcis with less worries and fear…doctor told me patients who worry a lot have a poor outcome.. i need to manage my anxiety before managing my cancer..its never easy..but after 2 months and a half now ..i cannot believe that i can write about my disease openly and without dropping few tears..i feel stronger..and my faith in God tells me that whatever will happen will be meant to happen,,i cannot worry day and night about my fate..while i am still here i want to benefit from each moment next to my kids and enjoy life with them as much as i can..we are fragile bcos…we are humans..one day our journey will stop for some reason whether its a disease or something else,,we cannot stop our fate..i am saying this bcos i have to reach this state of acceptance whats happned to me instead of being depressed about it….i will take it as a wake up call for me to better my life,embrace life with my family ,stop complaining and being positive at the end…managing my anxiety and stress is important as treating my cancer..and i see them both going side by side…..i hop wto hear from
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sorry ..this computer acting so slow and weird today….i find myself at peace these days especially after meeting with the oncologist i hope it will go on for a long time bcos i feel much better inside..i hope its not just a stage of some “ups”….Paula,i hope you reach the best decision that work for you…i would love to express my wish to hear from Hopeful32 soon as im a bit worried about her and didnt hear from her since septembre….Kat ,hope everything is going better for you ..i am heading on friday to Mexico for a vacation of 2 weeks with my family.. we ve been thru lots this summer and we finally deserve to have a break and get our mind away…..wish health and happiness for all the strong brave ladies who are newly diagnosed or who are fighting their fears and worries with their positive attitude….love and peace from Canada….
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Pingback: The Blessings of DCIS | DCIS 411
Without your blog Donna I wouldnt know by now supportive ladies like Kat and Hopeful32….such an acheivement with your personal experience with DCIS.,very inspiring and empowering indeed following your story lines ..i AM STARTING TO BE A LOT LIKE YOU,INSTEAD OF fear I want to take advantage od my DCIS TO be motivated and benefit from each Moment ..congratutlations on your new achievement..can yo update us after 4 years now about your DCIS ?? would be great to know.. I started with DCIS just in august,would love to see how things can be in 4 years from now..i know we are all different but its nice to know about other ladies going on this path…
PS: i can see you spent most of your time in mexico 🙂 can you tell me if October is a good time to go? we are leaving friday to the riviera maya..im hoping no hurricanes and rain 🙂 thank you…
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Hi Nissy,
I hope you saw my other very long reply. With regards to Mexico at this time of year, I honestly don’t know. I lived in Ixtapa from March – Sept. I would check the 10 day weather forecast this week. How awesome for you to get away with your family. Enjoy it!! And if it rains, just remember, there is nothing like a good rain storm for connecting with nature! And connecting with nature is one of the best prescriptions for healing!! Wishing you mostly sunny, warm days and a wonderful time with your family!! 🙂 Donna
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Hi Nissy, Donna, Paula and all of our beautiful DCIS sisters~
I duplicate the sentiment to Donna on a BIG CONGRATULATIONS to her for all the remarkable accomplishments and breakthroughs she has made and worked so hard on ever since she was first diagnosed with DCIS. If it weren’t for her blog, most of us us would have remained in the dark and afraid of what lies ahead…but having so much helpful knowledge about DCIS at our fingertips on her website definitely EMPOWERED each and every one of us! It gave us strength to face our fears and courage to look for the right options that fit our circumstances.
Most of us were originally given options to either have mx/or double mx with no rads… or lumpectomy with rads; but now each of us have chosen according to the consultations we have made with our surgeons/oncologists/radiologist oncologists/plastic surgeons/naturopath doctors, etc… I for one am eternally grateful for seeing Donna’s website and making up my mind to go for a 2nd opinion as that really made a huge difference in my outcome and outlook on life!
I chose to have Oncoplastic surgery which removed my lowgrade DCIS/ADHs at the same time; and I did not have to have radiation. So I’m very happy with the final pathology report and feel at peace about my decision. While I’ve had my hiccups since the surgery with infections; and one of my scars is more pronounced and may not heal as nicely; occasional pain and discomfort that comes and goes but bearable…I too feel like Nissy that I am at peace and can accept where I am with it now and see a much brighter and hopeful future ahead!
Overall… I feel truly blessed by the camaradie, friendships and support I received from everyone (including all the DCIS Sisters)! This has been a great learning experience…devastating at first, harrowing at times and then finally there was the light at the end of the tunnel and as it got brighter and stronger… the fears and trepidation started to dissipate! *And I too hope that all of us will be like Donna and Sandie and Kay who through their own DCIS experiences, can now give us their good reports on their years of staying healthy and remaining DCIS and cancer-free!
I’m so happy for you sweet Nissy that you are finally at peace about your decision and of course you have every right to change your mind at any time and as often as you need to, especially if something comes up that steers you into another direction! The main thing is that you felt a connection and comfortable discussing all your options with your Oncologist, and from there you felt at ease in making your choice about having rads! Good for you that you and your family are getting away for a real vacation!!! Wish I could offer some advice about Mexico but unfortunately I haven’t been there yet. Please stay safe, healthy and remember to forget about all your worries…and simply relax and enjoy the sun and all the pampering and accommodations at your Mexican resort! Let us know how your vacation went and please continue to keep us posted!
God bless all of you as we honor all of our DCIS/BC survivors for Breast Cancer Awareness Month!
Love & Blessings & Prayers for Everyone’s Peace, Light, and Good Health~
Kat Ü
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oops sorry…meant to spell it as “camaraderie”
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Kat….thank you again and again for the warm wishes and lovely words…I am up so early since 4 am,,eventhough my oncologist sounds convincing but the idea of a second opinion that I keep reading here sounds like a very good decision to make the right decision regarding treatment,,,would I be able to consult with Dr.Lagios if I am not an American citizen? I live in Canada,and just went thru some link that Donna posted about getting a 2nd opinion and it says that Dr.Lagios can have access to all pathology slides and other stuff..would he be able to do so if I live in Canada?
I appreciate your reply(Donna or Kat) hopefully before I leave on my trip on Friday!!..I forgot to say that what woke me up at 3 am was a sharp pain in my breast,,,i felt discomfort and couldn’t sleep,,its been one month since I had my surgery and still I have this pain !!!!
I am still going thru some moments of confusion….I have a scan and molding on Wednesday and will be scheduled for radiations when im back in novembre,,,things are getting serious and I want to know im doing the right thing..:/
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I meant a very good idea *
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and Kat,this is our 3rd time family trip to Mexico,we all love it there!!!, we went once in spring (May) and was gorgeous, another time in January and we had some rainy cold days..and now October not sure,,hope all will be good….thank you 🙂
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Hello Nissy, Kat, Paula and anyone else reading this!
I want to address each of your questions and comments and maybe my answers will be helpful to all of you plus many more…
Paula: Keep questioning, researching and listening to that voice inside. I went against lots of “expert” advice. Friends and family mean well (and so do most Dr.s,), but their concerns are often from lack of real understanding (much of the problems I find with the whole cancer industry). Dr.s have their agendas and we and our loved ones have fears that are not based on facts and truths. Wonderful that you have a great Naturopath. I recommend everyone finding someone with a holistic healing mindset to balance out the “conventional” pressures. I’m sure Dr. Lagios can work with people who live abroad. It may take longer for him to receive your pathology slides, but he does not need to see you in person — just your cells which he will arrange with your medical center where you did your biopsy once you fill out the paperwork. Following his review of your slides, the consultation is by phone.
When I was first diagnosed, my boys were 7 & 9…and I was getting a lot of pressure to have all the “aggressive” treatment. But, after learning all that I could about DCIS and getting 2nd, 3rd and 4th opinions (especially the 2nd pathology opinion), I felt like I would be causing more harm to my body and my potential to develop disease or cancer if I did more aggressive treatment (cut, burn, poison). I opted for the least invasive treatment and the most natural radical health infusion I could give my body. I was 100% motivated, disciplined and excited to learn and implement this new “radical health” model. I knew in my core it was the ONLY option for me and it was what I wanted to teach my husband, my children, my family and friends. I have come to believe that our society is going about the treatment of cancer wrong…and they are misunderstanding what it is. Once we come to understand it (through deep investigation), the fear just dissipates. Our strength can then become others strength. Those who choose very aggressive conventional treatments are believing that is the very best way to “battle” cancer. I don’t see it like that. I have lost several friends and family members despite them doing all the aggressive treatments Drs. say they should do. If I didn’t have my friend Adriana to steer me into thinking “outside the box,” I would have gone right along with all the prescribed treatments. Adriana planted a seed…but I was receptive…and hungry for the “alternative” information and viewpoint. I went deep into looking at the FEAR…and it took a long time (almost 1.5 years) for the fear to completely dissolve. But it did! And that’s when I fully removed myself from any doctors who were pressuring me and using scare tactics in any way.
One HUGE decision I made at this point was to no longer get mammograms. I have written a lot of blog posts about this: https://dcis411.com/2012/02/01/my-choice-for-no-radiation-no-more-mammograms/. Talk about going against just about every breast-related Dr. and organization out there. But the naturopathic, integrative, holistic practitioners get this and support this. In summary: radiation is a known cause of cancer. I had 11 mammograms in 6 years and I calculated I would have had a minimum of 19 by the time I turned 50. Over a 2 year period, I had 1 core needle biopsy and 3 surgeries on my right breast. Squashing and radiating that breast more (every 6-12 mths) could not be good for it. Plus all the research I have done shows how mammograms find too much low grade, non-lethal DCIS…and this is a big problem which I learned about 1st hand and did want want to continue down the path that would lead. My final surgery (Oct. 2011) left a “close” margin of .01mm. It was recommended that I have at least a 3 week short course of radiation or more surgery. I did not entertain either of those options and I am SOOOOOOOOOO GRATEFUL for my decision. Since then I have had an annual RODEO MRI in January (for the last 2 years). ALL HAS BEEN CLEAR. Please read about RODEO MRI here if you haven’t already: http://dcisredefined.org/choices/imaging-and-monitoring/rodeo-mri/
Every 6-9 mths, I have lab work done and retest hormones (saliva) with an integrative or naturopathic doctor. The last visit I had with a breast cancer surgeon or oncologist was with Dr. Esserman (Feb 2012) See my blog post here: https://dcis411.com/2012/02/09/dr-esserman-touts-tamoxifen/. I did not entertain tamoxifen as an option. I have subscribed to the same diet and supplements which I began 3 days after my DCIS diagnosis in January 2010 under the guidance of my friend Adriana who is nutritionist and “energy healer.” Everything can be found on my “Health Tips” page or my post “Donna’s Daily Rx”: https://dcis411.com/2013/04/16/donnas-daily-rx/.
The only thing I added back into my diet is organic coffee in the morning.
To all of you experiencing any pain or discomfort after a biopsy or surgery: CASTOR OIL PACK works wonders! I have been meaning to write a short article about this as it helped me tremendously. I was experiencing quite a bit of soreness and pain even 8 mths after my first surgery and was very scared to have a mammogram due to the pain. My naturopathic Dr. encouraged me to do a castor oil pack 2x a day for 20-40 min for a month. I ended up doing it 1x a day for 20-30 minutes in bed at night before going to sleep…and this made a world of difference! Please google it and you can find youtube videos on it. It is amazing how it works at reducing inflammation and tenderness!!
The decisions regarding DCIS are so very personal. Each of us must gather as much information as possible (especially about our individual cells) and then listen to our inner guidance. There are no guarantees no matter what path we choose. I do not feel I am taking a risk or being reckless with my health. In fact, I feel exactly the opposite. Through time and more in depth study, I have become even more emboldened in my choices and perspective on true health and dis-ease prevention.
On the other hand, I fully understand why people choose the MOST AGGRESSIVE forms of cancer/dis-ease treatment. It is an entirely different mindset. And the most aggressive treatment may be the best option for those who come from and relate with that mindset. Some of my best friends and closest family members come from that mindset. I offer what I have learned freely for all to consider….not to convince or persuade, but so that they may know that there are other ways….
Blessings of peace, health and love to all. Donna
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Thank you so much Donna as always you give such helpful suggestions and advice! I will definitely try the castor oil pack and will go on a hunt for it tomorrow! Your website has helped so many of us get through the rough stages of our DCIS diagnosis/treatment and aftercare! Thanks again for all of your and Sandie’s hard work in getting all the information out there on your new website: dcisredefined
It’s terrific and so are the two of you! Love & Blessings with humble gratitude~ Kat Ü
P.S. Have a great vacation to Nissy and family! Enjoy!!!
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Hi everyone,
its been a while since the last time Ive been on this page…we came back from our family trip last week…it was nice and we had fun…but I am back of course to my radiations therapy that I started immediately on Tuesday as I didn’t get the mail and I was scheduled for Monday so I missed one day….radiations treatment is still scary for me..everytime I lay there its really horrifying for me, I don’t mean to scare anyone here but I think I talked before about my anxiety and how it can make things worse…
so 4 treatments so far and 21 to go…its sure sad everytime I go there and its not easy…when we were away I was trying to keep my mind away as well and enjoy the moment…but now I am back to worries and questions..to ups and downs,,sure the weather here don’t make it easy on me to cope with my situation..i am not a big fan of fall season and the lack of sun and heat makes it worse for me….
does anybody know how to cope with radiations?? any special diet that might be beneficial..when we were away I indulged myself of course and gained few pounds that I lost immediately the moment we came back here from stress…so I am back to my healthy eating habits,juicing,organic as much as I can,etc…I was just wondering if there s any special supplements I can take to avoid the side effects of radiations..i know sounds so good to exist but just wondering…
I sure hope to hear back from you Kat and would love to know how you are feeling these days,also I am so worried about Hopeful 32 as she told me she will have a surgery over 6 weeks now and I never heard back from her..anybody knows??? thank you….
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Hi Nissy~
Welcome back! Glad you had a nice time in Mexico where you could forget about all your troubles and simply relax and enjoy the time spent with your precious family! Sorry that you are stressed out over the 21 remaining radiation therapy sessions left! I would probably be in your shoes had I opted to go that route…but I would also be searching the internet for any helpful resources like the “dcisredefined” website. It’s always full of helpful information…. but definitely it would be even more helpful if someone who already had radiation therapy would tell you what she did and how she prevented any side effects.
First and foremost I feel is to keep having a positive attitude and imagine the wonderful things you would like to do to celebrate once the sessions are completed and finally over! Since I don’t have the personal experience in going that route I can only relate what I’ve read that may help: kombucha tea, reishi mushrooms, blue-green algae & marine phytoplanktons, cholorella and spirulina were mentioned…but you should read more about it and ask your doctor or naturopathic doctor about it first to make sure it is safe for you to take. Ginger candy is good to chew or suck on for nausea. I don’t know if radiation is suppose to make your skin more sun sensitive or if you need more moisturizer right after each procedure? Anyhow since I’m no expert I hope others will come forward and let you know what they tried and if it worked for them.
As far as my breasts are now after 2 1/2 months post~surgery; I’m happy to report that the infection is finally gone and my physical scars are healing accordingly, and it’s liberating to be back to my normal routine as I can lift again and also continue to be an active caregiver for my aging parents! On the flip side, I have other health and weight issues that I need to address and work on. But since I know that Rome wasn’t built in a day… I simply take it one day at a time and keep counting my blessings!
I pray that you continue to feel and do well Nissy as you get through the last phase of your process…and also that Hopeful 32 is doing well too!
Please continue to keep us posted on your progress and how you are doing! Take care my friend and God bless!
Love & Blessings in God’s Peace and Healing Light~
Kat Ü
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hi Kat and thank you so much for your warms words that always keep making me feel better and sorry for the delayed reply,i am always away from the computer with 2 kids at school and radiations treatment…thanks for the info I am taking every day wheat grass poweder and chlorella…didn’t do yet my own research..im juicing lots of greens and adding organic ginger root to the juicing it sure taste awful but I read lately that ginger is so good at killing cancerous cells in breast cancer….just trying my best,,,im still going thru ups and downs,,today is one bad day for me…feeling down and sad…I hope I get better,,,being diagnosed since august now I still go thru downs and I still don’t get sometimes…
im glad to hear that the infection is completely gone from your breast and that’s your doing well..i can tell that you are keeping a very positive attitude and that you try to pass it to us and encourage us as well to stay strong…I wish I know you in person…
I just noticed that Donna poseted a while ago some answers to some of my questions…sorry I missed them and I just read them so thank you Donna…
I am thinking going on a short trip alone someplace once the kids take their winter break..just not sure where ..I need to get away..ive been thru lots…theres days that I cry cry laying down on that table getting radiations….feels like a nightmare..im sorry im just very sensitive to everything going on since summer and I find myself in complete disbelief sometimes…
I wish I can hear from hopeful32 I will try to send her a private em..
please stay in touch always…its always nice to hear your lovely words….
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Hi Nissy~
Good to hear from you ! Please don’t be discouraged…you are doing all the right things and remember what you’re main objective is…to stay healthy and live a very full and long life to watch your children grow up as they go through every milestone in their lives; and to be able to make them proud so they can follow your good example of a clean healthy lifestyle!
I hope that Donna’s helpful suggestions are helping to make the radiation treatments less uncomfortable and that it is also preventing any harmful side effects. You’re such a brave and resilient person and I’m proud of you for being so strong through all of your procedures! You’re doing great Nissy! Keep up the good work!
Your daily healthy organic juices and supplements are definitely going to keep your immunity level strong! Keep focused on beating cancer once and for all and staying cancer-free!!! Remember the most important element besides the healthy lifestyle with good nutrition and exercise…is to stay calm, always hopeful and positive…find your stress-free time to meditate or pray, or listen to soothing music…read uplifting words or listen to mood lifting cds or watch ‘something funny or happy’ on a dvd… or perhaps go to church and be surrounded by people that will encourage and inspire you!
And don’t forget to smile and laugh often…especially when you are with your husband and children…because laughter melts all your fears, cares and worries away!!! God bless and keep you healthy, safe and have inner peace and tranquility as we give thanks for all of our many blessings!
*Happy Blessed Thanksgiving to you Nissy, your precious family and to all of our beauitful DCIS sisters!
Love & Blessings to my sweet friend,
Kat Ü
Keep us posted and I’ll be here whenever you need support, love and encouragement!
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Hi Kat,
I want to thank you my dear DCIS sister and friend for always trying to lift my spirit with your encouraging words thru your private ems and posts here on Donna’s page, I am amazed of the caring person you are…I am always going thru ups and downs thru my radiations treatment..i sometimes wonder if it was really necessary and I think it was worth consulting with Dr.Lagios as you mentioned to me once…the hesitation that come really”late” is very self destructive..they say positivity and strong will are very important for the treatment to work,however I go most of the time there laying down tied up to that scary table not knowing if im doing the right thing..I think I am more traumatised by the experience itself,,and I keep asking myself if im going so far and what IF I just went for double Mastectomy and avoided all those radiations….
the questions inside my mind drive me crazy sometimes..too much to keep up with lately and I see myself stuck in the circle of questions….and uncertainty..I wish I can get over all the black thoughts…apparently these days its affecting me more than ever,,,i look at my kids and I have heartache..i don’t know what the future holds for me and them….I am scared…
I get to see my psychologist and she is good…tried today to get hold of one of the ladies of the BC support group for us to get together as the sessions are over and we need to work now on it in person..i didn’t hear from her yet…
I have my moments and I wish I can be more in control…the radiations are starting taking a toll on me physically and mentally..my skin is irritated all around the affected breast and underneath and I can see bruising and redness and some pain…my fear is not the skin itself is the long term side effects down the road…I ask myself how its possible those radiations can bring anything good to me …by my oncologist is a very sweet doctor,he gave me lots of his time everytime I see him and hes very positive..he even asked for P.E.T scan for me as he can see my anxiety level.and as I told you it came out clean and clear (Thank God) except for that “granuloma” on my lungs that he said it might be really old since childhood and its not signinificant….I was so happy the day he told me about that.. but since im so insecure I always want to hear reassuring words all the time or my mind will drift away with dark thoughts….
I think the extreme cold weather in Alberta is not making it any easier on me as well….
that’s my news for now…I will be done my treatment next Wednesday!! Dec 11!!! that’s 3 days as on the weekends we don’t go!!! looking forward to ending all this nightmare as im really very very tired…..
hope to always hear from you and thank you again and again for everything…
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ps: please don’t worry at all about the misspelling or mistyping words..im not any better and I have tons of mistakes in my texts…it doesn’t really matter..:)
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Hi Nissy~
I pray for your peace and comfort dear Nissy! I know that the mind can play tricks on us and make us doubt ourselves and the choices we have made…but as you know there really is no wrong decision when it comes to your personal health! The good news is that is almost over and you will heal and mend quickly from the physical and emotional scars that was afflicted from the entire ordeal…and what’s even better is that you will definitely be a bc survivor and have prevented it from becoming invasive! Plus you will be monitored closely from now on so if anything ever shows up…it will be in the beginning stage that will be treatable and curable! Which means you will live a long and healthy life to enjoy your family and watch your kids grow up into marvelous adults and continue on the legacy! That’s something to look forward to and shout about!!!
Each day someone is diagnosed with bc…and if caught in the early stages then just like you, Donna, Sandie, Kay, Hopeful32 ,myself and many other sisters who are bc survivors… that’s because we did the research and were given many new options that increased our survival rate and lowered the recurrence! By the time the next generation comes along…we may have eradicated cancer completely before it even becomes a concern! *I heard that they were doing some kind of ultrasound waves to remove cancer cells and that may replace any surgeries/radiations/chemo in the future!!! Let’s pray for that type of cure which causes no damaging side effects or painful surgeries/treatmensts or scarring!
Where there is s will… there wil always be hope! Remember Nissy…you ARE doing everying right for you…and you have so much to look forward to! Every day is a new beginning filled with renewed hope and joy! Live life to the fullest and believe in God’s promise which gives you the strength, faith and courage to continue to move forward and not live in fear or look back with regrets… Stay positive and keep smiling, sweet Nissy…and whenever you hug your kids know that your purpose in life is to be healthy and strong for yourself and for them! God bless always and fill you with peace and tranquility! Happy blessed holidays to you/your family and all of our beautiful DCIS sisters!
Love & Blessings, Kat Ü
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Hi Kat,my wonderful DCIS sister and friend,
I had on Wednesday my last radiation treatment..I was sure so happy to finish this torture for 5 weeks…I went out that day with husband to celebrate the end of this painful journey.however the pain is not over yet,and I mean litteraly the word”pain”….they told me the worst reaction from radiations will occur once I stop my treatment and it sure happening now…I am in terrible pain in my right breast,i cannot even describe this type of pain that I never had in my life,sometimes I feel like passing out ,it feels like burning needles all around my breast,especially the nipple and underneath my breast where the skin was peeling off…they said it will be like a sun burn they never said its MUCH WORSE !!! I had to phone the hospital today and luckily got hold of my oncologist who faxed a prescription of “Flamazine” and Tylenol 3 to the pharmacy…well Tylenol 3 is really not doing anything…they even told me the last day that it will get worse before it gets better in 2 weeks!! I cannot even imagine whats worse than this!! I am afraid of some infection as I can fee it somehow..if I stay like this im going to the hospital tomorrow…this pain is not normal….
I am sorry that I have nothing really nice to put up here 😦 but that’s whats going on with me..i believe in your comforting words …you give me lots of hope when I read your beautiful words and you make me believe that one day all this pain will be just a hard bad memory that will make me only a stronger person instead of breaking me…I sure hope so..i have so much to live for,2 beautiful kids that have lots of milestones in life for me to see …they are my whole life and I cannot imagine not being here for them one day..it breaks my heart….I don’t think any woman should go thru this !!! this is hard…I saw a lady who seemed to be younger than me who went for her first radiations treatment,,she had a baby of 7 months old!!!!! and she had chemo,she had it while she was pregnant !!! I know theres always worse and I look at those strong ladies and I see them smiling still and they inspire me a lot and I think to myself”if they can do it I can do it..”
I hope you re getting everything ready for the Christmas festive season…I went yesterday to watch my kids Christmas concert,, I was so much in pain but I was so glad to watch them both performing…with no bra on I had to keep my coat on all the time to cover up 🙂 sure not the best time of my life but I still have to overcome my pain to be around them….as im typing those words, I had applied flamazine and took a pill to sleep..hopefully my night will be better than my day..keep me in your thoughts dear Kat….:)
Hugs.
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Dear Nissy, I want to thank you for being so brave in sharing your raw emotions and experiences here. I am so sorry for all the pain and hardship you have experienced and continue to experience. It sounds really awful and I can not believe this is what thousands of women diagnosed with DCIS are faced with in this day and age. There has got to be a better way!! It is not often that women get to hear the truth of what radiation treatment is like and how it affects a woman both physically and emotionally. Kat has been an amazing friend and support to you and I am so happy you have found each other! Sending you a virtual hug and healing blessings. Donna
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Dear Sweet Nissy~
I am truly sorry that you have to endure such miserable and excruciating pain after all you went through; especially since finishing up your last radition treatment it should have been a time of celebration and joy; and not one of extreme agony and turmoil!
I agree with Donna…you are such a brave and courageous soul who is truly helping others in making such hard choices for themselves like you had to…by being so open and honest about the kind of effect radiation therapy had on you both physically as well as psychologically!
While each person is different and may or may not have the same side effects…I know that I really appreciate your candid, helpful insight about your own experience. That’s why we are all here on Donna’s website being here for one another as we each go through our journey… as well as learning from our DCIS sisters/friends! *Thanks Donna/Sandie for paving the way for all of us!
Yes, please go to the hospital little Sis… especially if you find the pain too unbearable and suspect there could be an underlying infection! Trusting your own gut instinct is important because you know your own body better than anyone else and no one should be expected to endure pain that is so debilitating and intolerable!
I feel so bad for you Nissy…you shouldn’t have to suffer like that…so I pray for you to be given the best solution (without any adverse side effects) to get rid of the pain.
You know that I’m praying for you right now that the pain has subsided and you are able to get some rest, and the areas which are tender are already starting to heal; and that you will not have an infection or any more discomfort!
I’m also praying for better methods that are less horrific or invasive in treating DCIS! Let it be gentler, kinder, milder and simpler and always healthy and good for our breasts/body!
Please know that we all care about you Nissy and are sending prayers for your pain-free comfort and complete healing/cancer-free recovery my dear friend! *Please keep us posted and updated on how you are doing…or if you need more words of comfort, support and encouragement, prayers and virtual hugs like Donna and I are sending you!
Love & Blessings in God’s Healing Touch~
Kat Ü
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Just wanted to say this is an awesome blog and it has grown so much since I started reading it a couple of years ago. I want to share a bit of my own situation, which I think might be helpful for some. I’m 57. In 2011 had a routine mammogram (hadn’t had one in over 10 years due to fears about radiation), but had a new doctor who pretty much demanded that I get one. It revealed a very small area of microcalcifications ( a term I had never heard before) in right breast. Birads 4, biopsy recommended.
I suffer from a neurological condition so am always very cautious and wary of ANY invasive procedure, so that put a natural slowdown on my decisions. I took the time to research and look into the microcalc thing. The radiologist report didn’t even give a measurement of these “small” calcs, nor any description other than “small group”. That wasn’t good enough for me. I made a special appt. to talk face to face with the radiologist to give me more specifics. Was told the calcs were indeed quite small 9mm in size. By then, I was already armed with info, having had some direct email with Dr. Gilbert Welch who was very nice and supportive. Long story short, my internist backed off insisting on a biopsy. (I also saw a breast surgeon at his urging, just for my own peace of mind and see what would be said in the consult). The breast surgeon (a general surgeon I didn’t like), hadn’t even looked at my actual mammogram pictures, and I had doubts he’d even read the report. He was all about $$.
Anyway, when I indicated that in no way was I going to do a biopsy, for a variety of reasons (my personal research and my overall not great health), my doctor amazingly told me that he felt I was making a very “informed” decision and he backed off. yay! Score one for me! I agreed at that time to do a six month follow up, just to see if this small group of calcs had changed. So, at six months had a repeat mammo. Result: no change. Had another 6 month mammo. Result: no change. I then told him I would go back to doing yearly. The result of the yearly in 2012: no change. Getting ready now to do a 2013 mammo. Hopefully no change.
Since I haven’t had a biopsy, I have no idea what this small group of calcs is or isn’t, so therefore I can’t say if I have DCIS or not without a biopsy. The point is: there’s no need to rush in a panic if you do your homework and stand up for yourself. I am opting for surveillance and yearly mammogram (which I still don’t like due to radiation exposure), and if anything changes, I will take it from there. But I didn’t rush into a biopsy. The calcs haven’t changed, grown or “killed” me as some people on one of the mainstream breast cancer forums tried to “fear” me into thinking. Sadly, some of the most fear mongering people unfortunately are those who have aggressive cancers and put all of us into their category. This is sad, and we have to keep our wits about us and tune them out. If you don’t, you’ll end up doing more harm than good. This is not one size fits all. I had to take into account my personal health issues, and opted for no biopsy at this time and instead am watching this abnormality. So, I hope my situation gives further insight ….that you don’t necessarily have to jump through hoops and do a biopsy if you feel it’s not right for you. A biopsy is invasive, it can do harm, and it’s not something to just “do” without intense thought. yes, watch the area of calcs, but don’t freak out. As I learned, in other parts of the world, these types of small calcs aren’t even biopsied. The U.S. is lawsuit happy and a lot of this is being done strictly for malpractice protection, not HEALTH protection. Once I figured that out, I realized that my best option was to be extremely cautious and not jump into anything invasive. . Again, do what is best for YOU. I did, and I’m happy with my decision thus far. Thank you and keep up the great work with this fantastic blog.
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Wow, thank you so much for sharing your story! It sure will help a lot of women who find themselves in a similar situation. There just isn’t much support out there for “active surveillance” — and you are right, the BC message boards can do more scaring than helping. That’s exactly what I found…and why I started this blog. We truly must be our own advocates and get as much personal information as possible before making such drastic life and body-altering decisions. You are absolutely right about biopsies being invasive. They are highly invasive and one of the causes of breast cancer is injury to the breast. My breast has never been more injured than it was from the core needle biopsy and then multiple surgeries. I had no idea about this at the time and was just “trusting” the doctors, nurses and radiologists. I am just so grateful that I had sense enough to question further treatment and put a STOP to the path I was being led down through FEAR of “what if?” When we step back and gather the info and several expert opinions and make a truly informed decision based on facts (not hype or fears), than we can sleep at night and know that we are doing the very best for our long-term HEALTH and minimizing HARM. I would love to start collecting “active surveillance” stories such as yours and sharing them on DCIS REDEFINED (My new site co-created with Sandie Walters). http://dcisredefined.org/choices/active-surveillance/ Would you mind if I shared your story there? THANK YOU!!!! 🙂
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I’m so glad my story can shed light on the active surveillance option, that I’m quite sure many women are candidates for and should at least be informed about, rather than pushed into biopsy. Your story encourages me to steer clear of biopsy until there’s an absolutely clear reason for it. Yes, it is invasive and can do a lot of harm. It’s not as innocuous as the docs make it out to be. I would be more than happy if you shared my story on your active surveillance site. I feel there needs to be a registry of women like me in a controlled study to follow long term so that we can put an end to the “we just don’t know” remarks whenever a woman asks if she’s a good candidate for surveillance rather than immediate biopsy. The breast surgeon I saw, when I asked if I could wait six months and watch the calcs almost screamed, “NOOOOOOOO!” in this hyper panic mode. I knew he was putting on an act, to fear me into this, so I wasn’t impressed by his acting job. I walked out of his office, never to return. I have no problem with doctors discussing in a rational manner all available options. I do have a problem with doctors putting on a phony act when they, themselves, know there are options. That behavior further decreases a patient’s confidence in the medical profession. This is what they need to understand. We no longer trust them, and trust is essential when being asked to go under the knife or have a needle shot into your breast while lying face down on a surgical table. And yes, sadly those women on other forums who have aggressive situations or brca gene or family history who live in a constant state of panic that they push onto other women, they need to understand that this isn’t helpful to the scientific advancement and understanding. We need research and science, not panic. I admire very much Dr. Welch and also Dr. Esserman who is at least questioning and trying to tailor treatments to a particular woman’s needs and medical scenario. So, yes, please feel free to share my story and I will try to keep people updated on my microcalcs. It’s been two years now with no change. This does not mean there won’t ever be a change. But it does mean that my decision to study and research was the right one for me. Thanks again for bringing light and logic into this very challenging and difficult situation for many women, you’re doing great work!
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Hi Informedconsent2014~ I commend and applaud you for your decision to do ‘active surveillance’ versus having a biopsy or anything invasively! That is so motivating and inspiring to the ones that have just been diagnosed with DCIS and to the rest of us that went through our own ordeals of ‘scare tactics’ by the professionals and had to seek but thankfully found other options and resources through Donna’s website and now the new “dcisrefined” co-founded with Sandie is truly a wonderful website that continues to update everyone with the newest information available to us!
Your story, along with Donna, Sandie and Kay will help others to stand strong by giving them another option (yearly surveillance without biopsy) and an incentive to choose their treatment wisely with confidence and one that gives them peace of mind. Thank you again for sharing and I hope to follow in your footsteps as I go back for my checkup in the new year! Have the happiest and blessed holidays to you and all the beautiful DCIS sisters! Love & Blessings, Kat
P.S. Hope that Nissy is doing better and will update us soon…prayers and hugs!
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wow, thank you so much for all your kind words of support, it means a lot! I firmly believe in paying it forward and sharing whatever I can with others who find themselves in the same boat. Only through sharing and communication can we reach out and somehow locate enough of us with similar cases and situations in which active surveillance is an absolutely legitimate and viable option. I appreciate SO SO much blogs like this, you have no idea. It gives all of us the education and the courage to stand up to medical professionals who although well meaning sometimes are themselves pressured to go along with “standard of care” even when they know inside that it may do harm. When I spoke directly to the radiologist who read my films, she was a very nice person who even though had to recommend a biopsy to protect herself professionally, she said, “it’s your body”. Amen. It’s my body, and I felt she was a bit trying to be supportive and hint that she realized that the biopsy recommendations in this country have gotten out of control. We need to reform the BIRADS scores! Many of these small calcs I believe can and should be downgraded to BIRAD3 or perhaps some entirely different scoring system which includes “watchful surveillance.” Again, it’s all about options. I wish all of you the very best holidays, and blessings for good health and most of all, courage! We are not in this alone and I foresee a really big push in the next 5 years or less of many many more of us who are reading blogs like this and other research materials about DCIS. When there’s enough of us, the radiologists and medical profession will be forced to listen to reason and get back to rational behavior. It has taken courage for those of us in this facing a DCIS diagnosis or potential diagnosis to stand firm, but it’s always the people out in front who get the job done. Thank you again ALL of you, for taking the time to share and care! I will update as often as I can with any further info – good, bad or whatever it may be. btw, I only have one risk factor for breast cancer: I’ve never had a child. Apart from that, I have no (ZERO) family history, no known genetic defect, I don’t smoke and I don’t drink. This must all be taken into account when doctors try to force biopsy on a patient and assess risk along with the medical evidence in front of them. From my standpoint, overtreatment starts with biopsy. That’s the first invasive procedure that should be avoided if at all possible. If we biopsied every “abnormality” on the human body, many of us would spend half our time in the surgical suite being cut open. That has to stop. Together, I truly feel we can make a difference in this area! God bless!
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Hi Kat and all the DCIS friends here..Sorry Kat for my delayed reply and I want to thank you along with Donna and “informed consent2014″ for all the informations and I appreciate your concerns about me a lot…as you know I was having an extreme pain right after my radiations therapy was over on Dec11..it started the next day and it went on with extreme pain for a whole week,,It was bad that I was crying like a baby..not to mention the whole DCIS story that’s been taking an emotional toll on me as you know very well since I was diagnosed in August…now im on the way to recovery and my skin is much better..its healing (Thank God) and I guess the reason is im following a very healthy diet too,all green and organic green drinks,lots of turmeric and ginger ..etc…so now im fine…and I can see the dark area of the radiations on my breast and surrounding tissues is lighting up every day to match with the rest of my skin,,slowly but surely..emotionally I still go thru ups and downs,,fear and worries of the future…after reading”informedconsent” story I got a bit lost…as much as her story is really a positive brave story,and she seems so much strong to denie a biopsy for this long..I don’t know but I think comparaison is not always fair..as im reading her story,she made me fall into regrets…if you think biopsy is invasive what about the tons of radiations I got over 25 days of treatment…I mean how can we know whats better for us when it comes to Cancer,,yes im definitely not like her and I wish I was so I can make a rational decision based on knowledge not fear..but im 42 and have 2 little kids and when the doctor says I need a biopsy to identify the nature of those calc of course I will go for it..what if I ignore and my DCIS breaks thru the duct walls…and then I will have invasive BC…which is much worse,,,I mean in the cancer field..its so confusing and honest I feel its a matter of each woman’s “luck” ..everyone is different…I could never ignore the doctor recommendation for biopsy and lumpectomy…however I regret radiations a lot..but still I did what was suppposidly the best to eliminate any chance of recurrence as they say…only God knows if I did the right thing..i hope I did,bcos after all its irreversible…I needed surgery to remove that DCIS and I don’t regret it but since sept til now and my breast is so sore from everything,the OR,radiations ,,and I don’t think this will go away any soon as some ladies in our support group said…..yes,I heard in different countries they don’t even treat calcifications or DCIS..btw there are 2 types of calcs and some calcif can be benin which probably the case of “informedconsent”….I think whats happening to us is not fair at all and reading your posts is making me believe more in that….there must be more researchs done in the DCIS field and there should be differents methods for approachs and treatments for the patients…in my support group I felt really “different” sitting with women with invasive BC !! they were looking at me as im :the lucky one” I didn’t think it was fair for me or them…when the sessions were over they didn’t even bother contacting me for their private get together ,and it really hurt me but I only felt they didn’t take me seriously eventhough they saw me how depressed and worried I was,,God knows…..I think in the Cancer world,everything is a mystery still even for doctors…they cannot study each woman seperatly therefore everyone get the same treatment…I don’t want to think I didn’t do the right thing anymore,,this will only make things worse,,we are all here different personalities..some panic,some keep their cool,,im the one who panic especially because I have 2 little kids….I know this blog calls for non invasive procedures and non aggressive treatment,,but after all each woman has to do whats best for her…and by the way my oncologist said that low radiations from mamo are more dangerous than high doses of radiations as treatment because I asked him to do every 6 months mamograme to make sure im always followed up he said I should do it every year for less radiations exposure,as I told him I had tons of radiations he explained that particular point……I wish my mind can take a break from this whole BC horror…ive been living really a poor quality of life since august…and it changed my life and my family’s life upside down….and im dominated by worries…for sure the story I read above helped me a lot calming down a bit ,same time wondering if I was overtreated…confusion doesn’t help my situation…for now I only want peace…..
Kat,I wish you had a great Christmas…now that my kids are home,im trying my best to be around them and enjoy cozy nights at home while surrounded by snow 🙂 …its a good time to just relax and take a deep breath again before we re back to school again….I will always check on this blog and I hope many ladies step forward and tell us about their experiences about DCIS..i am amazed that theres only few who talk here..its an important blog for all of us to support and share…and its very helpful for all of us…thanks again….2013 was the toughest year of my whole entire 42 years..i sure have a big wish now and I only pray it becomes true…..peace.
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Hi Nissy!
It’s been amazing to read your personal story and how bravely you are getting through this difficult time. The main thing I want to say to you is that each of us have to make our own choices, and because of the fact that NONE of us have a strong support system within the medical world, every one of us may have “what ifs” and second thoughts or wonder if we did or are doing the right thing. And that’s because there’s such confusion and lack of honesty in the medical world about DCIS and breast cancer treatments and options. That is not our fault. That is the fault of the medical world and the fault of those who benefit from keeping certain facts hidden from the majority of patients.
Even though I have opted for active surveillance of a group of calcifications that might or might not be cancer, I also have to prepare myself for it being more serious down the road, so we all make our choices and until the medical profession gets its act together and shows some sanity we are ALL in the same boat. Believe me, I worry every day, which is taking a toll on my health. I can never entirely put this out of my mind. I truly wish I’d never had this mammogram at age 55 (I’m now 57, soon to be 58), after going over 10 years without having one. But I caved in to pressure and did it and kick myself every day for having done it. Medicine changes. Research changes. The treatment that’s “good” today is “horrible” tomorrow. Unfortunately, that’s the way it is and I wish it weren’t. At this point, with so much that isn’t known, most of us are simply doing what our overall health and our gut tells us to do, mixed with hopefully a healthy dose of education along the way. But if something goes wrong, we have to just be strong and say, “well, I made my choice, it was made with the data I had at that time, and it was right for me based on that.” We can’t have regrets. My next mammogram might be terrible, who knows? I don’t think it will be, but I don’t have a crystal ball. No one does. So, I hope you can go forward, not with “what if” on your mind, but being proud of handling a really difficult situation the best way you could. Stay strong, and hang in there! I am learning a lot from all of you wonderful women here!
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Hello everyone! I’m just updating from my last post so that I can give everyone the latest information on the surveillance of my microcalcifications. I had a follow-up mammogram a few days ago (Dec. 2013), which showed again NO change in the microcalcs. This now makes two years of surveillance of these calcs since they were first discovered in 2011. I am still very happy with my decision not to have a biopsy until there is darned good reason to do it based on mammography films. I will do another yearly in 2014. If that one is also unchanged, it would mean three years unchanged. As happened last year, I was once again given a referral to a breast surgeon (the same one I saw in 2011 when all this first came up), and as stated in my previous post, I saw him that one time just for peace of mind, but I did not go back in 2012 to the surgeon, nor will I go to him in 2013. There’s no logical reason to do so. Obviously, the constant referral to breast surgeon even though NO CHANGE for TWO YEARS of these calcs is not for my health, it is for the doctor’s legal protection. There is where we as a nation and as patients must raise our voices and speak out, that there’s far too much of this going on. Am I supposed to pay a co-pay out of my pocket to see a breast surgeon that I’ve already seen once, for an unchanged abnormality? That’s ridiculous. It just shows clearly, more than anything can, that a lot of this stuff isn’t for our health or our bodies, but for either legal or money reasons.
I am aware that even though the calcs are unchanged in two years, that doesn’t prove that it’s benign. Maybe it is, maybe it isn’t. But the point is, I was and am a very good candidate for simply watching these calcs and not doing an invasive procedure (biopsy) for a potentially unnecessary reason. Two years unchanged is merely “suggestive” of the calcs being non-malignant. And as my own research has taught me, even IF they are malignant, my chances of treating it (if or when) changes become evident are as good as doing premature invasive things to my body. Naturally, I was very happy that there’s been no change. I realize mammograms are not perfect. All the “what ifs” can lead to a lot of stress. I am no different. I stress about the follow-up mammo all year and sweat it out before getting the radiology report (I always get the actual report to read for myself, I don’t depend on some nurse telling me something over the phone), but I am like anyone else. As Dr. Welch has so eloquently pointed out, women are put through immense stress over microcalcs, wondering and being “feared” and feeling panic and “what if” and “am I doing the right thing?” and on and on. That’s where the treatment and surveillance of microcals and DCIS in general has to change, so that we as patients feel supported by the overall medical profession. Until then, we are all in the same boat of questioning our own decisions, asking endless questions of ourselves and are we doing the “right” thing. All I can say is, I feel I am doing the right thing for me based on the mammogram findings, my lack of breast cancer family history, my other underlying health problems that I don’t want stirred up or worsened by invasive procedures, etc. I pledge to come back to this blog as often as possible and update everyone on what is found – good, bad or otherwise. And if it were up to me, I would go to an every other year mammo (not yearly) to reduce my radiation exposure. So, I’m not happy with doing yearly, but for now I feel like i ‘have” to do yearly or risk losing my doctor or finding myself labeled as a “bad” patient. But I know that with many of these indolent or slow “cancers”, even if I waited and didn’t do another mammogram for 2 years, my prognosis would essentially be the same. i.e. GOOD. The treatment protocols wouldn’t be any different. Anyway, that’s my general update. I am not a doctor, and I can’t advise anyone else what to do, but I can share my own personal story to help advance the knowledge and show that there ARE options and we, as patients, have every right to bring those options to our doctors, as I did to mine. And mine so far has, i think, maybe learned to respect me somewhat. Yes, the BIRAD4 score was still on my 2013 mammo. I was still once again referred to a breast surgeon. But we must ask ourselves how much of this is “legal” and how much is truly medical. Thank you again for all you do here, I admire each and every one of you and together we will make a chance! Happy New Year everybody!
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Hi informed consent! So glad to hear your update! Wonder if you have considered MRI for monitoring? Have you seen this page on dcisredefined.org: http://dcisredefined.org/choices/imaging-and-monitoring/rodeo-mri/
You are a smart, informed, empowered woman…and a warrior for the healthiest, sanest and safest choices! Bravo for shedding light on the truth about our countries medical/legal mindset.
I will be having my RODEO MRI on Jan 14th. Wishing you a Happy & Healthy New Year! 🙂 Donna
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Hi!
wow, so much great info flowing from all the wonderful women here! Re: RODEO MRI, I have heard of it, but unfortunately I presume it would involve injection of contrast dye, the same as a regular MRI would, and I am horribly allergic to contrast dye and cannot have tests involving it. I had a kidney scan years ago and had such an awful reaction, I was warned never again to have any sort of contrast dye studies. So, unless there’s an MRI out there that doesn’t involve contract media, I can’t go that route. I surely would love to do something other than mammogram for surveillance. I HATE the idea of the radiation, every time I have a mammo. It just makes me so stressed and worried. I think blasting our breasts with radiation is horrible, and is contributing to the rise in breast cancer in general. But I am always open to new forms of surveillance and hope in the years ahead we will be seeing a lot of progress made away from mammograms and into better and safer ways to image breast tissue. In the meantime, I wish you all the best for your MRI results and applaud you for using that test rather than mammogram to follow your progress. The only other issue that I have read about with MRI (regular, not RODEO) is the false positive rate, but apparently the RODEO doesn’t have that problem, so that’s a good thing. I do my best to keep up with all the latest info as much as is humanly possible. And honestly, I don’t consider myself a warrior or anything….or any stronger than anyone else. In reality, it was my overall distrust of the medical profession combined with my other pre-existing health issues that probably make me more cautious than the average patient who is otherwise healthy. It slowed me down naturally and made me not so quick to rush around. And I honestly never dreamt I would find out all that I have about overdiagnosis/overtreatment and premature “treatment” of DCIS lesions. But now that I have, it has indeed been empowering. I’m just as scared and nervous as anyone else, but it’s within my personal comfort zone vs. doing things that I truly suspect would harm me at this early stage of the game, whatever that may be. I think 2014 is going to be a year of big leaps in understanding, research and communication, and that will be a blessing to all of us going forward!
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I agree with your course of action. I was in the same situation as you. I took a wait and see attitude towards my calcifications. They remained the same for 2 years. The third year they had changed in that there were many more calcifications. At that time I was told I could wait and see in another 6 months but my gut told me to go ahead with the biopsy. I did and found that I did have med-high grade of DCIS. I opted for lumpectomy only because I had wide, clear margins and I felt I was being pushed, even threatened into following “standard of care.” I had the surgery on Thursday, rested Friday and was back to normal schedule on Saturday. After surgery I pursued instead natural healing…nutrition, yoga, acupuncture. I will have 2 1/2 year check in a few weeks. I have never looked back or regretted my decisions. If I have a recurrence I will deal with it knowing I dealt with it my way, and not the way of our “for profit” medical system.
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So with you Kay! Thanks for sharing as always! You are always a source of calm and common sense. I will be doing my 3rd annual RODEO MRI in a couple of weeks!! You will be in my thoughts. Wishing you a happy & healthy new year! xoxo, Donna
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You will be in mine, as well, and I know we will both receive good reports. Will be waiting to exchange good news with each other.
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Thank you so much for sharing your story, and of course it reminds me that calcifications can change but even when/if they do, we have OPTIONS that don’t necessarily include radiation or harmful meds and radical surgeries. . The fact that there were “many more” calcs in your three year follow-up would seem to suggest that a biopsy was warranted at that point, and I’d probably do the same as you, but at least by waiting, you were able to educate yourself far better than women who rush into biopsy without doing that all-important education.
I also totally understand why the vast majority of women do rush into biopsy….because of the horrific fear factor that has absolutely overtaken the medical world for various reasons, including the doctor’s rather over-inflated concerns about legal action, plus the Komen Foundation withholding extremely vital information that we all need to be truly informed patients on these matters. Not once did my doctor ask me any questions about my risk factors when the initial radiology report was done in 2011. It was clear that I was simply being put on a conveyor belt and pushed along. My only known risk factor is that I’ve never had children, although I’m not entirely convinced that there’s that much hard, statistical evidence to suggest it’s a huge factor. I didn’t start my period until I was 15 (which apparently is a good thing, less early start of hormonal activitiy), but again, I wasn’t asked any of these questions……just pushed along until I intervened on my own behalf. The point being that we are all different, with different bodies, risks, and health scenarios. I think the best description of DCIS I’ve heard yet is that it is a RISK factor, just as high cholesterol is a risk factor for heart disease. But as Dr. Welch states, we don’t do open heart surgery on someone who has high cholesterol….so why do horribly invasive procedures and meds and surgeries on women who have a risk factor for breast cancer? I feel it’s a great analogy and one that makes sense, at least to me.
It is really interesting to see how those of us with calcifications are making various decisions over time. We should all be in some sort of registry or study so that those of us who are opting out of “standard of care” can be officially monitored and add to the understanding and science of it all! I wish you the very best on your follow-up checkup, and the main thing is that you did your homework, you reached the best conclusion for yourself, mainly because you were armed with data, not fear!
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Dear Informed: thank you for all your comments. I am still having problems responding to these messages. I will just briefly say that I am thankful for your comments, Donna’s incredible information on books, therapies, doctors, etc. with which I am following up. I have also done other research on new therapies (UCSF) with hormone containment and DCIS –instead of surgery or radiation. I also have a friend who underwent 3 biopsies, refused surgery, and abnormalities (after 5 years) have disappeared–she said she did “watchful waiting” under a doctor’s control. I do not have the details of her condition, but she gave me hope to refuse surgery. Also, in my vast reading of this subject, I have found that some people believe that the (stereo) biopsy can spread the abnormal cells outside the duct. That worries me because I had such a biopsy and fear that I should have refused. My cals were so small and such a minor cluster (2-4). So does anyone have a comment on that fear? I also fear too often mammograms as my breast was irradiated so many times while the assistant tried to get a clear picture. Finally there is a TED talk about handling diagnosis differently on dense tissue breasts and all patients should be informed if they have dense tissue (I have not been informed). Thanks for all. Sherry
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Hi Sherry,
Sorry you are still having trouble posting here. 😦 Not sure why??? As for your concern/fear about the stereotactic biopsy spreading any DCIS….Dr. Lagios told me that you could chop through DCIS and it would not spread. It would take another molecular change to have that capability. I had that concern because I had positive margins — and I left them alone for 1.5 years — and the DCIS did not change to a higher grade or invasive. It did, however apparently grow in that time — or it became more evident on mammogram and MRI. Stress was probably my biggest factor though as I was dealing with my mom’s mental health crisis over that year. No sense worrying about the biopsy you had though. Best to focus on what you can do to positively impact your future outcome now. Minimize the stress and fears!!! Wishing you a happy & healthy new year! 🙂 Donna
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This is so informative….I, too, have been worried about biopsy spreading something that maybe should be left alone, which has been another reason that I have avoided it. It’s not the main reason, but it’s in the back of my mind. I suppose I do understand Dr. Lagios’ explanation, although not being a scientist, it’s a bit unclear. In my layman’s way of thinking, it would seem that if we chop up a contained cancer, the cells could then be released into the body and spread more widely. But apparently it doesn’t work that way. I think what is needed is more research on that particular notion or concept. I don’t think I’ve read a particular study proving or disproving the notion, but most doctors do say that biopsy has no effect. Hmmmmm, I guess I’m still not entirely convinced but I feel somewhat better if Dr. Lagios says it’s the molecular aspect of it….thanks again for providing this info!
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Hi Nissy, Donna, Informedconsent, Kay and Sherry~
As Kay said no matter what it is our final decision to make…but having the resources and information available to research and learn more about all our options (dcisredefined) can be the difference in making well-informed choices that fit our own personal circumstances. Some of us may or may not have regrets…but the main thing is to keep moving forward and to keep choosing wisely, trusting our gut instinct and having faith. I pray that SOON active surveillance and monitoring with a yearly MRI will become the top recommended method of treatment for non-invasive DCIS.
So Nissy continue to stay strong and positive and I commend you for your commitment to a new healthy lifetstyle! My admiration and respect to ALL of you wonderful DCIS sisters for making the right choices and thank you for sharing your stories with the rest of us to educate and to learn from! Your honesty and transparency is greatly appreciated. Have a truly blessed New Year 2014! Love & Blessings~ Kat Ü
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Hi Nissy~
I wanted to tell you that you’re doing a great job and that you should feel proud of how well you handled everything despite the hardships you faced in the decisions you had to make regarding your DCIS diagnosis/treatment. I know that it didn’t go according to your plans and wishes as you would rather have had double mastectomy instead without radiation.
However, as you said you needed to get rid of the foreboding fears you had in regards to any future recurrence because you want to be there for all of your children’s milestones in life; so you decided to go with your oncologist/surgeon’s recommendation of lumpectomy with radiation. And that’s okay Nissy because you felt it was the choice you had to make to give you a sense of security! There are others that have followed the same path and had to endure the pain, discomfort and anguish with having to do so many radical procedures that felt too invasive and harmful to the body! I know of a few that made the same choice as you and their life resumed on and they are doing well and remain hopeful.
I believe that you will be fine, especially with your determination to eat whole foods, juicing and building up your immunity to be able to keep your body in tip top shape…so that is your something ‘good’ that came out of a bad situation! Have confidence in knowing you will live a very long and healthy life and be able to pass on your healthy examples to your husband and children!
Honestly if this had happened a couple of years from now…maybe you and I would have reconsidered having any surgery or even having the biopsy done because there would be more understanding and advancement in the treatment of DCIS in the future! But since it is not the future yet, we both had to do what we felt was the best choice for us as individuals. I know I didn’t want double mx as I was not mentally ready to give up both breasts for a non-invasive cancer; however after having oncoplastic surgery where I did have both breasts surgically augmented I’m sort of questioning my decision on that but I also know that I was grateful for being given one more option that I wasn’t given prior to learning about it through Donna’s website.
Had I been strong emotionally I might have declined any surgery and asked to wait as the others are starting to do now by requesting ‘active surveillance’. But I also know my personality and I feel that I did what I needed to do for my peace of mind…but the more I learn through research/resources and others on Donna’s website, the more confidence I will feel about any future decisions I have to make in regards to my health issues. (Thanks again Donna and Sandie for collaborating your new website!)
Do I have any regrets about the choice I made? Of course we can always drive ourselves crazy with the ‘what ifs’ in life… and once in a while I will have a twinge of regret since I still have lingering pain and discomfort at times…but then I remind myself how fortunate I am that everything was caught in the early non-invasive stage and I have a better chance to improve my health and lifestyle. While I’m not where you are at because food is my downfall…I’m not giving up either. I simply get up each day and try again and one day I will be able to swap all of my healthy recipes and updates of how we’ve both managed to stay healthy and cancer free along with the rest of the DCIS survivors/sisters!
Take care sweet Nissy and hope you, your family and the rest of the DCIS sisters had a joyful Christmas! Feel positive and good about your progress…prayers to you, your family and everyone and their families for a wonderful healthy blessed New Year 2014!
Love & Blessings,
Kat Ü
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Wonderful reply Kat! Thank you for being YOU and sharing all! xoxo, Donna
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i cannot believe i was starting a big comment when i lost it by the click of a button!! ever happened to you? thats my husbands’ laptop and im not used to it and i am so frustrated now that i lost all the text 😦 i will try to do it again 😦
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i am really frustrated however i will try to repeat what i was saying..after a whole full sunday with the kids its frustrating when this happens .,..i will probably have to cut my text so i dont lose it all by a click…im sorry for my delayed comment,you know how its when you have 2 little kids and they both have tons of activities and birthdays…i was saying in my “deleted comment”:( that i relate to so many ladies here with their type of worries,one lady expressed her fears from the biopsy..like her i had fears and worries when i found out about my diagnosis as i thought the needle breaking through might help spreading the bad cells into the blood stream? however im glad that Donna confirmed that its not the case..because after my biopsy eventhough they told me to avoid lifting and taking it easy i didnt listen and the second day i was doing chest press with my husband as in summer (july) i wanted to start a healthy way of living ,ironic right? after i had my biopsy i never felt i will have anything wrong !!! i thought im 42 years old and i have 2 little kids and theres no way i can have anything bad in me!!! so i worked out hard that day,not knowing that in 2 weeks i will receive the worst news i can ever hear…
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well again thanks to Donna to clear this out cos i was still thinking about it…we are definitaly all different here however we all relate somehow…and i feel glad when i read all the comments from the lovely ladies on this blog…and especially Kate whos been my biggest support for quite a while now and i cannot thank you enough Kate for all the support you ve been giving me ,,I am beyond grateful to you taking time to put your lovely words to support me and make me feel better about everything..i sure dont know if radiations was the best for me..i can only say its done and regrets wont do me any good…i probably wished i didnt have to do radiations especially after an article i read today while i was googling DCIS…and btw im sure that Donna knows this article as funny thing i saw her comment on the same article that i found very relevant 🙂
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and that article was saying that DCIS sometimes doesnt even need surgery and can be treated with just anti estrogen medication…can you imagine if thats the case ,how much my treatment would be considered AGRESSIVE!!!! But since noone knows not even doctors,they just prefer to treat me and others like real invasice cancer…just because they dont know who can developp what in the future…the mystery in the DCIS field drives me crazy and its just so unfair for all of us to undergo all the invasive procedure if we didnt need it…..imagine with me that the fear from treatment side effects once you calm down become bigger than the fear than cancer itself? and im saying in DCIS case where many articles is saying its not life threatning and cannot spread!!!
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after going thru hell from radiations and the pain i had once my treatment was over,,,and noone was frank enough to tell me that i will cry like a baby from the pain radiations cause to the breast,,and im sure i was so sensitive myself to radiations to developp this kind of pain and i dont mean to scare anyone here im just telling my personal experience..i sometimes think radiations and going every day there was worse than anything else..it was a horrifying experience for me and i wish theres a pill that i can take so i can forget it all….
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im sure recovering,and the pain is not gone but 95 % less i should say…no burn anymore however the frame marks thats been left on my breast will always remind me just as the scar….since summer my lfe have changed a lot..i cannot believe all what happened and i sure need lots of time to recover and im not sure if i will be back like before….Kat,i would love to tell you that i met a lady from our support group last week who has DCIS like me and we talked and cried together and it was really wonderful to talk to her….as women in the same boat we all understand eachothers and we get comfort and support from eachothers and thats awesome…
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Kat,you always motivates me with your encouraging words..i sure switched to a a whole new diet,,,85% vegerterian,raw food,organic,super food,vitamins,juicing,etc…..i sure advice you to do so,,i sure believe in nutrition a lot..and when i eat healthy it gives me the feeling i am healthy…its just me…when this happened to me i even hated food,the one i used to have weakness for,like desserts,fatty food,meat….i suddenly saw in it my enemy knowing the fact that i i was always into nutrition and i had a good knowledge of food ..i even tried to keep my kids make healthy choices in their food habits..i beleive we are what we eat…i dont know how much in the cancer field this can be applied..but i want to take all measures that can protect me…i didnt come back to exercise since this happned as of course of tiredness and lack of energy and “depression: from al th ebad experience..but once i regain my energy i should work out too as i keep hearing about all the benefits that we all know…my 2 kids are my motivation…i want to live as long as i can God ‘s willing so i can see them grown ups….
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i am thinking consulting a naturopathe ,especially to give me some detox advise about the radiations i had…i have a question for Donna,do you think i can still consult Dr Lagios about my DCIS? eventhough i did radiations and im over with it…would he be able to tell me exaclty what would my prognosis be in my kind of DCIS? i was wondering about that….Donna did you have radiations? as I think i read that in your comment about that article..sorry if its not i could have missunderstood this point..
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Hi Nissy,
No I did not have radiation therapy…although it was recommended by several Drs. I just kept investigating and searching for a Dr. that was more in alignment with my beliefs. So I ended flying to San Francisco to personally see Dr. Esserman. Her words were always in the back of my mind….”if it doesn’t look like high grade DCIS, we should leave it alone.” Dr. Lagios confirmed mine was low grade, and then the oncotype dx test also confirmed I mine was “low risk for invasive cancer.” I’m sure Dr. Lagios could still evaluate your pathology slides. It costs about $600, but insurance may cover some as mine did. A naturopathic Dr. would be great regarding how you can detox from radiation. I have some good resources and I am going to be looking at them for a friend who is about to have radiation treatment so I will let you know what I find. 🙂 Donna
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as for the lady who said she didnt have any change in her calcifications i want to congratulate her..its so awesome when we hear good news,.i sure hope you wont have anything bad…i heard last time on TV about a 3D mamogram that is much better than regular mamograms which sometimes can miss some breast cancer…its down in the US..thats definitaly a good tool to use for screening…i will try to find that intresting article about dcis and share here if possible…i want to wish everyone here a good start of the week tomorrow,,i pray to God that this new year will only nring good news to all of us here,,because we all deserve to be healthy and happy….i think BC is the worst that can ever happen to a woman..and i hope in the future especially our daughters wont have to fear this terrible nightmare,our daughters and their daughters…i hope we all live til old age and look back and say how barbaric treatment was for our DCIS…i sure hope more researches can be done to save all women the nightmare of BC especially DCIS which is still more controversial than invasie BC itself….sorry again for the cut up comments..i was just afraid to lose my texts so i prefered to do it this way..Hugs from Canada…
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DCIS Is Not Invasive Breast Cancer, and Might Not Require Surgery
Tens of thousands of women are having surgery – sometimes even having both breasts removed – to treat a condition that is unlikely to ever become life-threatening.
In fact, a recent study concluded that a small, but growing minority of women with the condition – called ductal carcinoma in situ, or DCIS – are choosing to undergo a double mastectomy. That’s despite a lack of evidence for any survival benefit over less invasive surgery. But the fear is little surprise, given what’s unknown about DCIS.
Shelley Hwang
UCSF breast cancer oncologist Shelley Hwang, MD, is bucking this trend toward more invasive treatment. Her clinical research team is investigating whether at least some women with DCIS can safely omit surgery altogether from their treatment. In the course of their studies, the researchers also hope to fill in some of the knowledge gaps surrounding the condition.
DCIS looks like cancer. It generally grows as a small collection of cells lining the breast’s milk ducts. But DCIS cells do not behave in the same way as the cells of an invasive breast tumor – pathologists can tell them apart. Unlike invasive breast cancer cells, DCIS cells do not have the capability to spread and grow in distant parts of the body. And unlike invasive breast cancer, DCIS is not life-threatening.
Unfortunately, women who are diagnosed with DCIS have a higher than average risk of developing invasive breast cancer later – although some never will. As it stands, there is no proven way to predict which women diagnosed with DCIS will eventually develop invasive breast cancer. But because of the elevated risk, surgery to remove DCIS – generally a lumpectomy with radiation, or mastectomy – has become standard treatment. Treatment options are the same as for early-stage invasive breast cancer.
Hwang is exploring to what extent targeted drug treatment with careful follow-up might become a low-risk alternative to surgery for many of these women.
The question is hugely important – DCIS is epidemic. Blame mammography. To detect breast cancer at earlier, more treatable stages, mammography guidelines now call for screening women as young as age 40, and compliance with screening guidelines has increased. When there was less screening, many fewer cases of DCIS were diagnosed.
Hwang has launched clinical trials to explore drug treatment for DCIS. At an annual retreat for members of the UCSF Helen Diller Family Comprehensive Cancer Center’s Breast Oncology Program, Hwang described some preliminary findings from a study of 62 women diagnosed with DCIS who underwent three months of drug treatment – prior to surgery in most cases.
These were DCIS cases in which the abnormal cells possessed estrogen receptors. Estrogen is known to drive the growth of invasive breast cancer that has estrogen receptors. To treat DCIS, Hwang and her UCSF clinical research team used the same estrogen-targeting treatments used to treat women with this so-called estrogen receptor-positive invasive breast cancer. Premenopausal women received three months of tamoxifen treatment, while postmenopausal women were given letrozole for the same duration.
Hwang and colleagues imaged DCIS with MRI at baseline and at three months into the study to demonstrate a significant reduction in tumor volume among treated women. In at least one case, there was no remaining DCIS after drug treatment alone. The appearance of cells changed as well.
“We found striking differences between tissue at baseline and treated tissue,” Hwang says.
Hwang – along with Helen Diller Family Comprehensive Cancer Center researcher Karla Kerlikowske, MD, and colleagues – is also investigating biological markers within DCIS tumors. These markers might prove useful to predict response to therapy, and to predict which types of DCIS might be associated with a greater risk for eventually developing invasive cancer.
“There appear to be many interesting targets for therapy in DCIS, in addition to estrogen,” Hwang says. “We would like to look at some of these markers as potential targets.”
Hwang now will spearhead a second study, this one focused on postmenopausal women, through the Cancer and Leukemia Group B, a cancer research cooperative group that includes academic medical centers nationwide.
Hwang notes that in the past, there has been some resistance to even conducting such studies. Giving drug treatment before surgery is called neoadjuvant therapy. It requires that doctors and patients be willing to delay surgical treatments that have known benefits. However, neoadjuvant therapy already has proved to be safe and effective for some forms of invasive breast cancer; for DCIS, it may help women avoid surgery altogether.
Hwang’s research team aims to identify women with DCIS who can safely forgo surgery unless and until their DCIS worsens. She says that she and her colleagues must ultimately show that drug treatment for DCIS can prevent invasive breast cancer from ever arising, and that DCIS can be successfully monitored to determine whether it is progressing toward invasive breast cancer.
“I think it’s really important to emphasize that none of this will go forward until physicians and patients are comfortable with the idea that treating DCIS is a way to prevent progression, rather than that DCIS is a disease that needs to be cured,” Hwang says. “This will require a frame shift in how we think of preinvasive cancer of all types, and may have implications for how we intelligently manage the unintended consequences of cancer screening.”
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Thanks for all your comments Nissy. I wish I could reply to everything, but it is not always easy as I too have two kids and work and now two websites plus all the research i do. I just want to say I am so happy you have found this blog and especially for your friendship and support from Kat. She often replied to you just as I would have. I want to share with you and everyone that tonight I found out that my dear cousin Amy who is a Naturopathic Dr. just found out she has breast cancer. She is someone with the best attitude, diet, and knows and does all “the right stuff…” and yet she still got breast cancer. She has a strong family history with her mother and sister. Her attitude is great though and she is in the planning phase of taking care of it. We all must do what is best for our peace of mind. I respect every woman’s decision for what is best for her and her family. The problem I have had with the way in which DCIS is treated is that there needs to be less treatment based on fear of what if… and more treatment based on actual pathology….and more individualized treatment based on low to high grade DCIS. Mine was low grade, and I truly felt the standard of care was “over-treatment.” This may not be the case for everyone….and standard of care may be the best way to go. Whatever the decision, one should keep looking forward and not live with regret. We do the best we can with the information we have at the time. I was TOTALLY CLUELESS at the beginning of my journey and did not even begin researching until after I had a needle biopsy then a wide excision biopsy (really a lumpectomy) and then they wanted to do another surgery. It just felt like there was something wrong….and then I also had my holistic friend rescue me from more surgery/radiation. I may have done all of it as I simply didn’t know to question Drs and that I could actually say “NO.” Same goes with mammograms. We have the option to say NO and I really hope women start questioning and investigating. Positive changes are on the horizon because women are using their experiences and becoming empowered. Nissy, keep looking forward and learning from your experience. NO REGRETS!!! 🙂
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Dear Donna and Nissy~
Much love and thanks to you and all of our other DCIS sisters that continue to share about their experiences! That gives the rest of us hope and the knowledge and determination to keep looking for better alternatives. So please remember to to give yourselves a great big hug for being so strong, having faith, fortitude and courage and for paying it forward to others that are in need of the same comfort, support and encouragement as they go through their journey with DCIS or BC. My prayers for Amy to stay positive, health~conscious, calm and to be victorious in winning her battle with BC. I hope when she is ready that she will share her story with us. We pray for comfort, peace, light and complete healing and recovery for all those that are going through this type of ordeal. Take care and stay healthy and safe and blessed with an abundance of joy and love! Love & Blessings, Kat Ü P.S. Nissy ~So glad that you made a friend who can relate to you and that you were both able to share and be there for each other! Sisterhood and friendship is what helps us get through our difficult times…each day brings new hope and promise as we place our trust in the Lord. Think happy healthy thoughts and smile! Ü
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Thank you Donna for your quick reply and sorry to hear about your cousin ,apparently doesnt matter what we do sometimes, we cannot avoid our “destiny”..all in the hands of God and Gods willing she will be just ok..I second every word Kat said..i cannot add any word to what she just said….she said it all as usual in her own warm way as a caring lovely lady…i dont know what to say,today is not one of my best days…i feel sad everytime some woman out there have to face this..sorry…..
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Hi everyone,
I hope everyone had a good weekend…I am reading a lot ,as usual, about BC ,related diet and nutrition,lots of stuff. As I asked my family doctor all the reports since I was diagnosed,because I asked for An appointment with the naturopaths doctor and he required I have them all on me, so while I was going thru the reports again,I noticed that I’m 5/5 er ,pr positive ,none told me this fact before which means I’m strongly hormone positive….so now I’m trying to check all the estrogen food off my diet..I’m reading a lot and I’m getting confused sometimes, the same vegetable can be cited as estrogen im while in different articles it’s safe. I’m so confused for instance about flax seeds oil,chick peas (hummus) since I adore hummus and I eat tons of it !!! Now my question to Donna since you re an expert in this field. What food er positive BC woman should avoid.? I’m reading a lot about how coffee is high in estrogen. Doesn’t matter if organic or not..I’m also considering the removal of both my ovaries and probably uterus. The doctor didn’t even give me tamoxifen and since I need to block this huge amount of estrogen,wouldn’t that be a good thing ? Since my C feeds on er,pr so if I don’t fix the source of the estrogen being high how can I really prevent a recurrence ? I’m seriously considering a surgery to remove my ovaries and probably uterus. I know I’m 42 but I need peace of mind and relief,one that I always had heavy menstraution since a long time..now one more thing I’m reading a lot about the importance of liver in detoxifying our body of excessive estrogen and if we have weak liver obviously this mission won’t be accomplished. Any idea about a great detox for the liver ? Lots of detox schools,some Chinese medicine and it’s hard to make a decision. Please ladies I need your help and opinion regarding everything I just mentioned.
Thank you ,
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Hi Nissy,
YES — it is all very confusing! I have found it helpful to always check 3 resources that I trust…and then I also ask my health guru Adriana. Much debate about soy as well. But it is the type of soy that matters. Should eat only organic, fermented soy — not fake soy foods. Ground flax seeds and oil are extremely good. Chick peas and hummus are fine (despite all the scares on the internet). Adriana said: “Avoid hormones from chicken/eggs/dairy. Eat only organic; eat more anti-inflammatory foods; add turmeric, lemon, cinnamon; Reduce sugar. Coffee is highly acidic and should only have once in a while (organic).” Here’s what I found on the coffee and estrogen study: “among Asian women, those who had 200 milligrams or more of caffeine a day had higher estrogen levels compared to those who consumed less. A similar pattern was seen among black women, though it was not statistically significant. In white women, however, 200 milligrams or more of caffeine appeared to have a slight lowering effect on estrogen.” http://well.blogs.nytimes.com/2012/01/27/caffeine-alters-estrogen-levels-in-younger-women/?_php=true&_type=blogs&_r=0
Info on tamoxifen:
Recommend:
What Your Doctor May Not Tell You About Breast Cancer: How Hormone Balance Can Help Save Your Life http://www.amazon.com/What-Your-Doctor-Tell-About/dp/0446615404
The Wisdom of Menopause (Revised Edition): Creating Physical and Emotional Health During the Change by Christiane Northrup M.D.
Avoiding Breast Cancer While Balancing Your Hormones
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Thank you Donna for all the links ,those books sound interesting,however i still look forward to hearing from the ladies here who’s been in the same situation,if they consider ovaries removal,as I went thru the books mentioned above I remembered that I forgot to mention IOdine and it’s obviously very important link to BC…I went today to the health food store about got myself a bottle. There is a dr.david brown stein i came across his very interesting books too and he puts lots of emphasis on iodine .i am willing to purchase some of his books. He sounds brilliant and has answers to our questions that conventional medicine cannot answer for us.
Thank you for explaining the hummus confusion glad to hear I can still have my organic hummus ! 🙂 as for coffee for some reason I couldn’t open the link but I assume that having coffee in moderation can be ok..lots and lots of Infos on the internet that we get really so confused.
Thank you.
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From Sherry forwarded message. Nissy why do you want ovaries out? I believe taking out organs can cause way more problems. Is your doctor recommending this? On the estrogen topic you probably know to avoid canned goods because the liners have BPA which is an estrogen mimicker. I use no canned goods. I forget your diagnosis but if it is DCIS stage 0. You may have little to worry about (except stress). Sorry I don’t know your whole story but have u gotten several opinions ?
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Hi lit lady
Sorry for my delayed reply but with 2 little kids,hard to be on time.yes I was diagnosed with DCIS so Bc stage 0. Pre invasive ? I don’t know many names for DCiS that get us all confused about this mysterious disease. I don’t eat food from a can anymore,I rarely did in the past anyways. I avoid plastic a lot I’m eating mostly organic,stopped red meat since august,I only have organic chicken,eggs,once in a while,wild salmon,lots of greens,anything you can look it up and that says anti cancer I have it,so you can tell I’m doing my best,not everyone able to do so.a friend in my support group doesn’t. But if cancer is related to bad eating habits I’m giving it a try..I was strongly pr,er positive but my oncologist refused to prescribe tamoxifen. I only did lumpectomy and radiations. I regret radiations a lot but it’s irreversible now. When it comes to hormonal imbalance it’s more than just food from a can don’t u think so .? I read a lot and hormonal balance is very complexe. That’s why I thought the best way is to. Remove what produce estrogens at first degree and that’s our ovaries..do u agree..?
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And I’m sorry if I sounded a big negative in my message above ,the one before the one I just sent,I just get lost sometimes when I hear that perfectly healthy people can get this as well…I just felt sad because everything is still fresh for me and I find it hard to see more women going thru this. I didn’t mean to pass any negativity. Doesn’t matter how strong we can be,this is a very hard experience for any woman in this world.i hope Donna update us about her cousin s news and how is she coping with her diagnosis…thank you.
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OMG Missy, I am totally freaked. I changed my diet drastically after by BC diagnosis. However, I gradually resumed drinking coffee. I drink 2 cups of organic espresso (at least) every day now. I knew I was taking a chance with the acidity but thought I balanced that out with my healthy choices. Your comment pushed me to look up coffee’s relationship to estrogen. I’m going to have to drastically reduce my coffee consumption. Call me bummed!!!
Anyway, I don’t use flax seeds: too much mixed info there. I eat organic and nearly vegetarian. The pancreas is involved with the digestion of protein. It is also a major cancer fighter. I don’t want my pancreas distracted by excess protein digestion. I eat lots of broccoli. I also take DIM, which is a supplement which contains the active cancer fighter in broccoli – and other cruciferous vegetables. I also take Chrysin, a supplement used by athletes to create more testosterone from our body’s androgens. Androgens are undifferentiated sex hormones. Anyway, Chrysin helps prevent the production of estrogen. These (among other supplements) were prescribed for me by a naturopath.
BTW, I chose not to have chemo or radiation. Diet, exercise, and supplements have been my treatment. Feb 7th will be 3 years since I found the lump. So far so good, but I will have to stop all the coffee.
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Missy,(sorry, auto correct keeps changing your name) I made a mistake. I’m nearing my 2 year anniversary, not 3rd. Wishful thinking???
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Hi Charlene
No worries at all,auto correct is frustrating and I’m sure same thing happens with me as in typing and my text sometimes makes no sense bcos of some mistakes done on my iPad. You are very brave and courageous to opt for alternative medicine. I don’t know if I could be as brave as you, if I go back I would only prefer NOT Having radiations ,I would still have my lumpectomy of course. Radiations left me in horrible pain since dec 11 and I should say that I’m extremly radioactive sensitive bcos some ladies I asked didn’t have anything while mine was terrible. And I mean pain and the burn. It was one of the worst pain I ever experienced in my life.
Now I know it’s irreversible but I’m trying my best to maintain a healthy lifestyle,organic food,lots of juicing,supplements,etc….I’m reading a lot to be aware what’s good for me and what’s not but I want to meet with a naturopaths to get more help. And hopefully some detox from all the radiations I had and all the estrogen that fed my C. Addition to that I’m thinking about removing my ovaries as well,probably my uterus. I will tell my oncologist on February 10 about my decision. I feel that I have to be armed with all kind of weapons to beat this. My fears of recurrence is always here,I have my downs and ups. And I will start working out next week as I keep hearing about all the benefits no doubt..
Charlene would you mind telling me about your story.? You said you have lump since 2 years,did you do a mammogram,what is your lump? Is it a dcis. .? And this supplement you talked about sounds interesting. How do you feel after you changed your lifestyle .? I know it takes lots of bravery and strong will to change our eating habits and I know it’s so difficult to do so.but I’m trying my best. I have my weak moments where I want to have a hamburger….or a dessert.
I would love if you can share you experience here and yeah I wish you celebrate even more years not 2 or 3 much more indeed as we always do…
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Hi Nissy. Mine was IDC. My sweet treat is organic cacao with almonds bars. Otherwise my sweet stuff is orgainic green tea with organic raw honey. I feel quite good since I changed my lifestyle. I lost about 60 lbs and am pretty much st my ideal weight. Of course others think I’m s pain, since it is no longer super easy to find places to meet and eat. I had a hair stylist treat me roughly because I commented that I don’t use cream rinse because I avoid toxic exposure. I don’t wear makeup. I use baking soda for deodorant. It actually works quite well. I don’t use pesticides or herbicides anymore. The lawn will just have to have weeds.
I found the lump myself. It was huge. It was Feb 7, and the surgery was March 7. The took 30 some lymph nodes from my armpit. One was cancerous, but they were described to me as being quite a mess. So, I still have pain. So fat, though, no lymphedoma. When I can find it I will post my supplements, if that’s OK with Donna.
I see the once this Thursday, and yes, I am nervous. I hope the blood work shows good results. My once was not happy with my decision and basically told me I would die without her toxic treatments. I hope to prove her wrong!
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Hi Charlene,
Sorry for my delayed reply,what is IDC. Yours sounds invasive? Sorry i m just assuming ,bcos you said you had lymph nodes positive.all I can say you are extremely courageous to reject treatment. I don’t know what I would do myself. I hate poisonous treatments as we’ll,I’m so much into holistic medicine I’m reading more and more. But I found out from my very short experience in BC from the women I meet and the things I read that we are not all the same .basically in cancer I think really that each individual is unique such as his treatment. Some has chemo and survive many years some don’t. Some have no complications from radiations some do,some cure miraculously some are not as lucky. As for us as patients it gives us lots of hope when we find an old lady who survived after decades right? How did your blood test turn out.? I hope all is good. Btw,anyone heard about the importance of iodine?and it’s link to breast cancer.? I need Donna to answer please. It seems it’s deficiency is related to bcc however iodine supplement and it’s safety is very controversial. Please an answer if anyone knows about.
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Nissy–glad to hear you did only lumpectomy and not anything more drastic. I am choosing to do nothing except work on health, research, destressify and wait and watch. I sense that you are overwhelmed by all the nutritional stuff and maybe over concerned about the estrogen stuff. Read AntiCancer (as listed on Donna’s website) and Mind over Medicine (also on her site). Both of these books really directed and calmed me to take control of my nutritional life and my mind/body. I think we can go crazy with trying to do all this stuff to our body (like removing organs) and trying to chemically balance our bodies when even the chemists and others do not totally understand the mystery of how our biology works. I do not feel that some “miraculously” are cured of this disease and others are illogically struck down. I truly believe it is a malfunction of our bodies and our immune system which is under constant onslaught of poisons, pollutants, and chemical pumped into our environment. We can, I believe, prevent and reverse its progress by building up our immune systems and getting in harmony spiritually and emotionally with our bodies. I applaud your doctor for not putting you on Tamoxifen. I hear it has terrible side effects. Trust your body and treat it with respect and work on fear control. I really believe that there are so many healthy ways to “beat” cancer naturally and using alternative methods. I am compiling a list of books for a cancer awareness club at my school and you can not believe how many have been written by people who have “conquered” cancer. It is amazing. These people did it and so can you. You should google the topic. I am amazed at how many people are out there who “cured” themselves or befuddled their doctors. This world is filled with miracles. Good luck.
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Hi Donna and all the other ladies on this page,it’s been a while since I’ve seen any post here…I was asking if anyone heard about Iodine and its important link to bc. Means if we are deficient in iodine. I’m trying to add lots of supplements to my diet. Any advise about the best supplements take. Thanks.
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Hi Nissy, we have some good info listed on our new website regarding iodine. Here is the link: http://dcisredefined.org/integrative-solutions/natural-risk-reduction/supplements/
I have been taking iodine (liquid drops) for 4 years and I think it is a huge factor in eliminating premenstrual breast tenderness and fibrocystic lumpiness. I get mine at Vitacost.com. Others have said they take Lugal’s solution. My naturopathic Dr. said not to take iordal — not sure why. Hope this helps. 🙂 Donna
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Hi Donna,thank you for the link, it helped,I’m seeing a naturopathe soon but for now I’m trying to stay healthy and read a lot about supplements. I read about iodine. However it’s so delicate to use it. The one you mentioned is very high dosage of iodine and it can affect some. That’s why. As they say one size doesn’t fit all and it applies on each supplement. I have another question. I did my lumpectomy in September ,finished my 5 weeks radiation therapy in December. And my breast is still so sore and I feel discomfort when I sleep and it hurts sleeping on the side where the breast was operated. Is it going to be a chronic pain or this is something that will heal with time? Today is one of the days that the pain is really bad. Not sure if it’s bcos I started chest press 2 weeks back at the gym..any recommendations for this annoying kind of pain and tenderness ? Thank you.
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And I meant Iordal. This one is high dosage of iodine probably 25 to 50 mg /tablet. While the recommended daily dosage on the iodine drops that I take is 1000 Mcg. That’s way lower dosage. I need to block naturally the production of bad estrogen too. The estrogen that is toxic and comes from chemicals from outside our body. I need some ladies here to help me share their experience about radiations please. Thanks.
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I too had a lumpectomy, was told the DCIS was gone & when I went for Radiation, I was told the pathogists reviewed my outcome & feel it’s spreading & now require a Mastectomy. I feel helpless & pushed into this decision. I would like to have surgery on the breast at the same time so I don’t need another surgery in the future, Is this possible? After reading your experience, perhaps I will just leave things as is…..
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What doesn’t make sense to me is “that it spread”. DCIS doesn’t spread. Did they mean that it was multi-focal?
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If you feel pushed do not do it. Get a second opinion. I am going to at City of Hope. They told me doctors are not as radical. In sorry but I distrust the medical bureaucracy and monopoly. Do you know about the huge cure to cancer summit in April? Google it. I think I am going.
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What does this mean? Dcis spreading ? Probably you mean multifocal in different areas of the same breast so they have to do mastectomy? If you need mastectomy you have to do it,sorry I don’t want to sound rude,but we cannot rely on other people experiences to decide. Everyone is different. If I have multi focal dcis I have to go with what the surgeon tells me.and as much as some say dcis is not that bad as invasid bc but each one should be treat herself really seriously. Good. Luck. Please let us know what you decide and how they didn’t find out its multifocal from the start.
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Hi everyone,
I wasn’t sure where to post, so am providing a follow-up, update to my situation which I thought many of you would find interesting as an indication of how the medical profession pursues biopsies on patients like me who have opted instead for surveillance of a small group of microcalcs. Just to recap so you don’t have to go back thru all the posts, I had a routine mammogram in 2011, they found a small 9mm grouping of microcalcs for which biopsy was recommended. I did an extremely thorough investigation and opted NOT to do the biopsy and instead did follow-up mammograms (2012 and 2013). No change has been detected in this group of calcs, yet (of course) biopsy is still being pushed, although my personal physician hasn’t been rude about pushing it on me. He knows that I KNOW a lot about DCIS and breast cancer in general. Anyway, my latest mammo in Dec. 2013 showed no change and I’ll have another mammo in Dec. 2014. But here’s the thing: today I received a certified letter that I had to sign for from the breast radiology group, which of course scared me, thinking they’d found something weird or were demanding some further action on my part. I signed for it (name on the dotted line) and it was just a repeat of their other letter saying I had to get a biopsy. Clearly, this “signed for” letter has everything to do with their legal protection and little to do with my medical well being. I’m bringing this up to show, once again, how really pressured and at times endlessly harassed women are about getting a biopsy, even when they’ve shown, as I have, how well informed I am. Even my own doctor realizes that I know what I’m talking about and had to back off the biopsy pressure. And on top of it, two years of mammo monitoring have shown no change whatsoever in the microcalcs. I realize this doesn’t “prove” that the calcs are benign, but as I told my doc, I’d have to see a lot more evidence to justify an invasive biopsy procedure, which as we know, can set off another round of potentially UNnecessary treatments or diagnosis. So, I just thought I’d share my “sign the certified letter” experience today in case anyone else goes through this when opting out of biopsy or choosing surveillance of microcalcs or other breast abnormalities. It seems the tracking and the pressuring of some of us just never ends! UGH!
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I received one once, also. When they found my calcifications had changed, I switched to a radiologist that does nothing but breast imaging and I received a certified letter from the original group stating that they had found calcifications and the Dr’s recommendation was to have it biopsied. It’s crazy what they do to protect themselves from being sued. And you’re correct…it is harassing and undue pressure to follow standard of care.
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Thanks for sharing your certified letter story. Wow, that truly is amazing. Once you are aware of it, it becomes very evident that many doctors are driven by the fear of lawsuits more than the optimal health and well-being of patients. It helps to share these stories. I have had my share of C-Y-A statements by doctors but never a certified letter! Thank you!
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thanks so much for your replies to this. It’s the first time I’ve ever gotten such a letter – and it was merely a copy of the others that I’ve gotten since 2011 with the biopsy recommendation from the radiology group. I try to see it from their perspective and understand that doctors are being insanely pressured, just as we patients are – to protect themselves, to “comply” and on and on. What needs to be done is a total overhaul of the entire mammogram and biopsy recommendations, the malpractice fears, and in particular the BIRADS scoring system that automatically puts all calcs into biopsy status, regardless of patient family history, size of calcs, etc. But as we know, it’ll be a few years before things start to change. I am so proud of Donna for starting this group and for everyone here who contributes and revisits the group to share, even if it’s a somewhat small story like this, because other women might benefit from realizing just how uptight radiologists are about mammograms and biopsy recommendations. I read something online yesterday that said that the mammography field is the most regulated and watched in all of radiology. Why? It’s because of the hysteria and insane special interest pressures that have been brought to bear, and that’s why we need change through better medical research and logic, not hysteria. I was really happy to see the recent Canadian study, even though American radiologists (predictably) have largely ignored it or put it down as being “flawed”. If they think it’s so flawed, then why don’t they band together as a professional group and spearhead a similar study here in the U.S. so we can start to get some real answers on just who needs a biopsy and who doesn’t. That way, we can all be freed of this constant harassing nonsense which I’m sure even some of the docs despise and are very tired of having to run around and send out letters and all this type of thing. Anyway, I will always come back here and share and update! Thanks so much for all you do!
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Thanks informedconsent2014 — love how openly you share your perspective — and it is so nice to know others that think just like me! Thanks to mkashley1956 (as always) also!!
🙂 Donna
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oops, i accidentally double posted – please delete the other post, that’s my wordpress screen name, I go by informedconsent2014 here at DCIS411…..thanks!
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hmmmm….I do not see a dbl post…but will delete if I do!
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thanks! it posted under a different screen name thru wordpress so you should see the duplicate one up there before I had signed in as informedconsent.2014…
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deleted!
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thanks so much!
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Thank you, Donna, and everyone who has contributed their stories. Mine is a bit different, and I am opting for the double mastectomy with implants. Here is why:
My first mammo was at age 16. Both my breasts were filled with so many fibrocystic lumps and my breast tissue is extremely dense. Through my 20s I had mammos maybe every 2-3 years – my docs and I could never tell what was going on with manual exams. I was often told I had the densest and lumpiest breasts they had experienced. In 30s I started having mammos every year, and one led to a needle biopsy. 40s – same, every year. At 50 (I am 54 now) I had very difficult to read mammo, and started getting ultrasound as well, each year. More needle biopsies in both breasts. Then a year ago, I had many hard and painful lumps in the right breast and a bloody discharge. I had a cone biopsy, the radiologist removed what he could of a papilloma and took tissue samples. All looked clear. However, the discharge and pain continued for a full year and was just getting worse. I would take my bra off in the evening, and always have brownish stains from the dripping. Not good!
My mammo this year, and ultrasound, revealed that the papilloma grew larger and needed surgical excision. And note that these mammograms were so painful now that I would actually yell when they squished my breast – and I needed a towel to soak up all the bloody discharge.
I had the surgery last week (and had the J-wire inserted, which was hell, too). The lab results say I have grade II DCIS and it is spread over a large area. Based on my family history, it does not make sense for me to try and do lumpectomies (I would be disfigured, too, since it’s such a large area), and radiation, etc. As for the diet – I have been organic for years, eat meat rarely, exercise and do yoga, pray/meditate, take supplements and vitamins – you name it. I can’t do anything differently there than I am already doing. So, based on my family history of breast cancer (and ultimately died of other cancers that appeared later), I am deciding to have full mastectomy with implants in both breasts – including the healthy left breast. I just want to caution others that if you have the degree of DCIS that I have, you probably don’t want to mess around, trying to avoid the surgery. However, it sounds like many of you here don’t even have pain or discharge and it’s a tiny area and considered grade zero – so perhaps you can get it to resolve itself. I also note that many of you do seem to be encountering health care providers who really are stuck in the ice age. Please don’t be afraid to change providers if you can, and get 2nd, 3rd opinions.
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Hi Donna, just want to say hi it’s been a while since I was last here..another thing I faxed my referral forms to dr.lagios today and for my surprise they phoned me right away!! I was really happy to hear from his office. Now looks like my referral is in process however they need to track all my mammograms and pathology slides from Canada which might takes time…I just want to say thank you because without your blog I wouldn’t be able to know about dr.lagios. I cannot wait to hear from him soon,thank you for advising me to consult with him…and I’m hoping to hear good stuff…I want to add that I miss Kat and hopeful on your blog. I never heard from them since a long long while now.i hope they are both doing well,,,regards.
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Hi Nissy,
Great that you will be consulting with Dr. Lagios!! He is a true expert on DCIS pathology — and I think you will find his personalized evaluation extremely valuable. Keep us posted!! xo, Donna
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Hi Nissy & Donna~
Sorry for being out of the loop but life has been hectic! When you mention how busy it is since you’re a young mom I can totally empathize because I went through that but now being a caregiver to my parents is really keeping me even more busy and it can get stressful at times! My Dad has gone to ER twice within the last couple of months and we’ve had to move him to a new boarding care and he is on Hospice and thus we visit him daily; but surprisingly he seems to be improving so we’ll see how things go! It’s by God’s grace and Dad’s determination and will.
Nissy…I’m proud of you for doing the research and taking Donna’s tips and advice and I feel you’re doing the right thing by seeking Dr. Lagios’ opinion! It’s always good to get 2nd and third opinions for your peace of mind.
I agree with you that we are indebted to Donna’s blog because we have such great resources, mentors and made connections and friends because of Donna’s quest to help others like us that have been diagnosed with DCIS. Now with their website “dcisredefined” both Donna and Sandie are reaching out and helping so many more that are seeking answers and options! Thank you so much Donna and Sandie!!!
Wishing all of you a blessed week and hope you had a relaxing Easter weekend. Take care, stay in touch and keep us updated and please know that prayers for good health and results, hugs and blessings are being sent your way…Kat Ü
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Hi Kat, Sorry to hear about the stress and health challenges with your dad. Sending lots of love and light to you both. Thanks for all the kind words and appreciation….always! Blessings, Donna
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Hi Kate and Donna ,thanks for your support and sorry Kate to hear about your parents,you seem to be a wonderful caring daughter..god bless you…I cannot wait to have dr.lagios calling me once he collect all my records,they are doing awesome job and I’m so happy how fast and hard they are working to track my pathology slides,Sheila at his office is a very nice lady…she said he will be in Europe soon so probably it won’t be before 2 weeks or so til I hear from him …I will keep you posted.xoxo
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Thanks so much for your comments and support litlady1 and mkashley1956! I too was confused by the statement “There should be no radiation for in-situ cancers.” First of all, I don’t even believe DCIS is “cancer.” I have found solace in the movement by Dr. Esserman and colleagues to remove the hysteria-producing word “CARCINOMA” from the diagnosis. I believe a lot of DCIS is overdiagnosed and overtreated…maybe not all, but a large %. I do not know what I would do if I had high grade DCIS and tested “high risk for invasive cancer” on the Oncotype test. But at least now I know I have some great resources should I be presented with this or invasive cancer in the future. All we can do is gather ALL the info from both sides of the camp and then do some serious soul-searching with regard to our personal situation/pathology. My searching led me to great “alternative” and “integrative” resources that made sense to me. I have met incredibly brave women who are standing up for their health, their bodies and their lives, despite the “standard of scare” they were initially presented with. And yes, I found Chris Wark and his http://www.ChrisBeatCancer.com site to be incredibly inspiring and resourceful… I often refer people to his site. I resonate with his path more than the conventional path. I created this site because I found nothing out there that offered support of this nature — a place where women were questioning their doctors and the aggressive and invasive treatment being offered. The path I have taken is not for everyone, but I find great solace in knowing there are many others just like me who believe the current system and mindset is truly failing women. As Dr. Esserman has stated, we must demand change.” I am so grateful for all the women who have contributed their thoughts, stories and outrage at our failed system. Change IS happening because of US. Blessings and health to all, Donna
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Great words Donna! I refer people to your site! I am on a site with daily updates of women with Breast cancer. I am horrified by what I read. It is called What Next. I rarely contact the people who seek help there unless they report they have non invasive DCIS. Then I give them a heads up to research their condition and mention yours and Chris’ site. In my search for info I also found Marnie Clark’s site from Australia. She has her own saga with breast cancer and healing. I receive regular notices from her. After researching my DCIS I contacted my cousin a radiologist now retired. He reported he thought I had little to worry about. If a radiologist said that, well I’m not too worried. I am waiting and watching and changing my lifestyle. Keep up the good work. Somehow I am going to weave all this into a book.
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Donna you know that you have greatly touched so many lives in a positive and informative way. We do our own research as well and thus we make the final decision in regards to our own bodies…but what you offered to us was more insight, options and a wealth of knowledge/resources! I personally met with Dr. Silverstein (thanks to your website/blog) and am very happy with the route I chose. The nice thing about both you and Sandie is that you’re so open-minded, caring and have welcomed any and all of our comments, concerns and input by constantly giving us support and words of encouragement regarding our DCIS diagnosis and the choice we make. We believe in you Donna because you took the time to care and share with the rest of us that were going through the same dilemma! So with a grateful heart we thank you for your wisdom and knowledge that you shared with us…Peace, Love & Blessings, Kat Ü
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Thank you so much Kat! You have been a tremendous supporter to me and to so many women on this site and on http://www.dcisRedefined.org!!
In 2010, when I went on other “support” sites and message boards, I found a lot of criticism and negativity for my views — questioning of the “standard of care” — when I was initially diagnosed with DCIS. I did not find the resources, support and peace of mind I was desperately looking for….so I created this site…to tell my story and to seek others of like-mind…who are looking for better solutions to the current epidemic of DCIS and its radical, fear-based, often unnecessary treatments. When taking a bold stance, there will always be opposition …and people will find or stir up fault/controversy….but I am 100% sure that what I present here and on http://www.dcisRedefined.org is helpful to many many women….for these sites provide personal stories (not just mine), excellent resources and encouragement for 2nd opinions, reasonable conventional as well as integrative options (that Drs may not be aware of), and peace of mind. So glad you and others have benefited from this site Kat and feel as I do…that we must continually help one another and demand/create better, saner and healthier experiences/outcomes for the 60,000 women+ annually diagnosed with DCIS. Thank you thank you thank you Kat! 🙂 Donna
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Hello everyone
Its been a while. However just wanted to update you about some of my news and hopefully i can find some good answers from you. First i talked with my husband last week with dr.lagios and he only had good things to say. He was so nice and he just made my day. The day before it happened that i had my mamogramm. The right breast ( the one that had dcis was ok) however they found in my left breast what they called ” fibroadenoma” that needs to be biopsied next week. At first they said a cyst however dr lagios said a cyst doesnt need to be biopsied if its a cyst and fair enough my dr phoned me to say that its a ” fibroadenoma”. Now the joy of receiving good news from dr lagios was almost ruined by that ” fibroadenoma” and the biopsy that i have to do next week. Anyone had fibriadenomas? I can see the mass on the ultrasound and it looked oval well defined. If anyone knows please leave a feedback as my anxiety level is over the top these days. In leas than a year another breast biopsy and im just freaked out
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Hi Nissy, So sorry to hear about your recent finding. I just did a quick google search and it seems these are benign. I would continue researching — and question if biopsy is truly necessary. Glad you had a great phone mtg with Dr. Lagios. He truly is an expert and it is very reassuring to speak with him and ask any questions regarding your personal cells. Good luck and please keep us posted! Donna
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Hi Donna. I just felt like sharing my GOOD NEWS With you. the results of the biopsy came out BENIGN… I am extremy happy. This is a huge burden lifted off my chest now. Wheeeew !!! And i can hopefully spend finally a good summer. This is the best day since my first diagnostic. I was extremly anxious about having something much worse than dcis this time but apparently it was just a benign cyst. View my dcis history they were just more cautious. Thank God. 🙂
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I’m very happy to discover this web site. I wanted to thank you for your time just for
this wonderful read!! I definitely appreciated every little bit of it and i also have you book-marked to check out
new stuff on your blog.
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Thanks for the nice comment! It is so nice to hear from like-minded women who are benefiting from this site! You may also want to join our new Proactive breast Health Club:http://dcisredefined.org/proactive-breast-health-club/
Be well! 🙂 Donna
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Thank you Donna. My biopsy on tuesday. I am nervous and im praying for good results. The radiologist didnt seem to be worried but he said to biopsie view my history if dcis. Dr.Lagios explained everything to me and he told me to email him about that new finding. I think that ia good that i can still communicate with him. Lets see.
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Wonderful news Nissy! So happy that you can just relax and enjoy your summer now! 🙂
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Yay Nissy!!! Sorry i have been out of touch but a lot has been happening with my parents. But anyhow I just want to say how happy I am to hear your good news! Take care and may there be more good news reported from everyone in having excellent results! Love & blessings, Kat Ü
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Hi Donna,
Thank you so much for your blog. I was diagnosed 1 week ago with DCIS and I am freaking out. My Doctor told me I need to have a mastectomy and that I have no other options. I am still researching and trying to find as much as I can about the disease and hoping that I can save my breast (I’m 44 years old and single). I completed my BRCA genetic screening today and I have an appointment to see a holistic doctor in a few days.
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Hi Wendy, Be sure and have a 2nd opinion from Dr. Lagios before making any decisions! I hope you are becoming more calm as you do the research. I made this website for women like you — as I know how awful some Drs make it seem. Remember to take some deep breathes and know that you have time. DCIS is not invasive cancer and there is no mad rush to do anything. There are definitely options other than mastectomy! Please keep in touch and let me know if you have questions. Blessings, Donna
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Thank you Donna. I really appreciate the encouragement. I will keep you posted.
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Hi Donna…I hope you enjoyed your vacation. I had my 2nd opinion with Dr.
Lagios, but my MRI was completed 8 days after my mammary duct excision, so he recommended I wait a minimum of three months to allow my breast to heal and have another MRI. This gives me time to work on my 30 day detox plan which includes, change of diet along with a bunch of supplements, infer-red sauna treatments, colon therapy, hyperbaric chamber treatments and dental work by biological dentist to remove my silver fillings. As you can see, I have been a busy little bee since my diagnosis. Thank you again for this valuable blog. I will keep you posted. Regards, Wendy
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Hi Wendy,
Absolutely, you need to get a second opinion and get all your records and fully educate yourself about the type and extent of DCIS you have. I also agree with Donna that you should have Dr. Lagios give you a second opinion on the pathology. In most cases, taking the time to do this is not going to adversely affect your outcome. Quite the opposite. NOT to do it could really lead you into doing a knee jerk reaction and having a major procedure that might be avoided with further input from other doctors. Depending on where you live, you might also want to consult with Dr. Laura Esserman at UCSF. I’ve never consulted with her personally but have read a lot of good things about her. Talk to people who are true experts on DCIS. That is key. Also, good luck with the BRCA test, that will also give you more input and info about what to do or what is best for your individual case.
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Hi Informedconsent2014,
I requested my 2nd opinion with Dr. Lagios this afternoon. Hopefully, I will have all of what I need in the next few weeks to make an educated decision. Feeling empowered at the moments. Thanks for the advice!
Wendy
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Wendy get as much info about your DCIS as possible I.e. Stage which should be zero and other specific details. If you research a ton you will find info on cell structure etc and when I pulled all my lab reports mammo info etc I found I had the mildest type possible and prob posed no threat. Get knowledgeable on everything and listen to Donna. This is a site I have recommended to many diagnosed. I have done nothing except changed diet and other aspects and am currently seeking second opinion thru city of hope. They possibly support active surveillance. I too felt railroaded into surgery but not a mastectomy! Your doc sounds extreme. Best of luck.
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Litlady1…Thanks for the advice. I definitely plan on getting a second opinion and changing my diet. Having a mastectomy is the very last resort. I will keep you up to date. Regards, Wendy.
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Thank you for this, Donna. I have the same questions (why still barbaric methods?) and walk the same holistic path. I’d love other updates since 2011 (it’s July 2014 as I write this).
I was diagnosed with DCIS – intermediate grade – and it’s so close to the nipple, the surgeon is telling me she will have to cut off and around the nipple to get in and remove the DCIS. For this reason, she is suggesting a mastectomy. B/c if she cuts off the nipple portion of my breast, reconstruction will probably not look like what I want (and I don’t see how they would / could do that) and I’d need radiation. She knows I don’t want radiation and with a full mastectomy, I won’t need chemo or radiation (well, she will still need to test the lymph nodes). A mastectomy for DSIS is the furthest thing from what I want.
The surgeon I am working with is very highly respected in my area and she also took my case to “rounds” per my request and a suggestion from a friend’s neighbor who has been through a mastectomy. Everyone present (other breast surgeons, pathologists, radiologists and plastic surgeons) agreed with her recommendation. I have talked to many women in my area who have gone through some form or BC and nurse navigators, etc and I have heard stories about this doc where she wants to spare the breast with lumpectomies but the patient wants a mastectomy so I know she is not a cut, cut, cut surgeon.
I still need a second opinion but none of the 3 places I called in my region will call back. Two of them get the highest scores for BC. Also, with the everyone at rounds agreeing, I’m not sure I will get another opinion about how to remove this.
So, I am not sure what to do. It seems like you and most commenters on this site and all women I’ve spoke to who have been through something similar have had the DCIS excised with lumpectomies at least. I am holistic and am actually working with someone who healed herself of this same diagnosis and same recommendation (mastectomy): http://healingpath.info/ but I still have that nagging concern in the back of my mind.
Just some background, in 2006 I had discharge upon expression and it tested for blood (a sign that says there is more to investigate). Same surgeon/breast specialist as above wanted to remove duct to check. I did not want to do this. I worked with acupuncturist in my area who dedicates her studies to cancer treatment and worked with her for awhile. After working with her and doing everything she suggested, it tested negative for blood (and nothing showed on ultra sound) with two other breast specialists and they said it was fine as long as it doesn’t test for blood. So this has been living in the back of my mind since 2006. Fast forward to one and a half years ago in Feb 2013, my OBGYN found a lump. I waited a year and a half and went to my regular doc to check it out. Got my first mammogram (didn’t want the radiation before), ultra sound and needle biopsy. Came back intermediate grade dcis. Waiting to meet with my doc about the MRI results. I’m not sure it was the kind of MRI you are recommending for the breast. I know it’s a breast MRI (there was a place to put your breasts) but not sure if it’s the one you refer to. My doc did say that I do not have the cancer gene after she got my BRACA test results back.
So mastectomy for this seems so barbaric and so extreme even though I know why she is recommending it and I do respect her.
Gosh, that was long. Thank you for taking the time to read this.
Thank you for creating your site.
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All I can say is 2 words: Dr Lagios!!! His 2nd opinion consultation is well worth the $ even if it is out of pocket. He is the expert here and can give you peace of mind with your very difficult decisions. Also Dr. Mel Silverstein is an oncoplastic surgeon who may offer you another option other than mastectomy. He is in Newport beach, CA. If you click on blog and scroll backwards, that is really the continuation of my journey since 2011. I have had annual RODEO MRIs for the last 3 years and all have been clear. I did not take tamoxifen or do radiation (as highly recommended). I have eaten the same clean, pure, organic diet (Donna’s Daily RX: https://dcis411.com/2013/04/16/donnas-daily-rx/) and continued with daily exercise and yoga for the last 4+ years. I am perfectly healthy and happy and eternally grateful I did not do all that several Drs were pressuring me to do. I no longer have a Breast Specialist Dr. overseeing me — as there is nothing to oversee. I have labs done annually as well. Everything is working perfectly in my body and I have NO WORRIES AT ALL! I know there are no guarantees, but I have done so much research and know that I have many healing options should anything arise in my body or in any of my family members or friends bodies — if they are open and seeking alternatives to conventional medicine. Please see the “Resources” section here http://dcisredefined.org/resources/books/ and http://dcisredefined.org/resources/articles/ as well as review everything on both of my sites. Please let me know if you have any more specific questions and please get your paperwork started with Dr. Lagios!! Blessings to you, Donna
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Hi Sculley….hang in there. My “breast specialist” is recommending I have a mastectomy because my DCIS is close to the nipple as well. I confirmed that I have low to mid grade DCIS. Dr. Lagios performed my 2nd opinion, but it’s on hold for the next 3 months because my “breast specialist” recommended I have an MRI 8 days post op from a mammary duct excision. I am using the time to detox and I will follow-up with Dr. Lagios after I have another MRI. I agree that a mastectomy for “pre-cancer/stage 0” seems so barbaric. I am also BRCA negative with no history of BC in my family. Stay encouraged. Donna’s blog is amazing!!
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I was very pleased in reading your article. I had core biopsy done and surgical biopsy 7 months ago with Atypical result . Bad bruises and hematom from excessive bleeding . Still dealing with the swelling and pain. I don’t understand and don’t know what to believe anymore but God. Thank you and keep me posted
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I have just had a similar situation. I got a referral to a breast clinic because both my nanna and my mother had breast cancer but later on in life so I knew I was at no immediate risk but I wanted to know if I could be tested for the cancer gene that is talked about. Unfortunately at the specialist I was advise that even though I was a slightly higher risk of breast cancer due to family history, my risk was not high enough for gene testing to be covered, and it could cost me about $5k to have done off my own back! So then I went on to say I didn’t want a mammogram (and I was under 40 so it’s not recommended anyway) and wanted an MRI. Again I was told I was not a high enough risk to have it covered by the Gvt so it would cost me $350 if I wanted it. OR they could do a breast exam then and there, and send me to have a mammogram then and there, and it wouldn’t cost me. So they convinced me, and the next thing you know I’m 38 and having my first mammogram. Then they come back in and want to look at the left breast again. Then again… about 4 times in total I had my left breast squish and prodded around. Not exactly a good first experience. Then they sent me to have an ultrasound – during which the nurse advised that they were checking on something but that she should not see anything to be worried about. Still, she would call in the ultrasound doctor to take a look. They too couldn’t see anything. However, when I took everything back up to the specialist, the showed me some “micro calcifications” that he wanted to check out, and said “so we will get you in for a hook wire biopsy on Friday morning….here are the hospital admission forms for you to complete”. This was Wednesday. I didn’t know what to say…I never really was given any kind of option. I was advised the hook wire was a piece of metal they would insert into my breast to ‘point’ to where the calcifications were so when they did the surgery, they could find them (because they could not be found under ultrasound). I read your story and agree with you 100% about the horrid hook wire going in. Being made to sit in a chair while squashed in a mammogram machine with three people around while one doctor is sticking a wire into your breast is not really the best thing in the world to have done. That was done 8:30am that Friday morning, and then I went back to my hospital room to wait around until my 1:30pm operation. The op itself was over and done very quickly and with very minimal pain, but I was surprised by the severity of what THEY called a “biopsy”. I was left with an incision over 4cms, which was only 12 days ago so will take time to fully recover from especially considering the chunk they appear to have taken out.
So when I returned the following Wednesday, I was very surprised to hear they found the cells to be cancerous. I had the same diagnosis – DCIS. However,…I’m a lucky one. Maybe it’s because my doctor was a breast cancer specialist to begin with…not sure. But I was told it was probably one that would never have been seen on a MRI and maybe it could have been there for years and then sat there for years still without doing anything, but they have it all out now and with completely clear margins, and it was stage 0 and very low grade (non-invasive) so I didn’t need any further treatment. NOTHING. No radiation,…no monitoring for 5 years… nothing. All he said was he would see me back in 6 months for a check-up, 12 months for another mammogram, and then I should have yearly mammograms. So I was totally fine with that – to me, I didn’t actually have cancer at all….all they found was something that could one day become cancer but may not have, and they have removed it fully now anyway so there will never be a chance of that becoming cancer. I was told I potentially ‘dodged a bullet’ and should ‘go out and by a X-lotto ticket’.
STILL now, with the more research I do, the more I question whether in fact I SHOULD have further treatment such as a bout of radiation to be sure. I just don’t know. I mean, I am more than happy with the diagnosis and feel lucky because of it,….but still there are seeds of doubts. Should I be concerned or just go with it?
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I have just had a similar situation. I got a referral to a breast clinic because both my nanna and my mother had breast cancer but later on in life so I knew I was at no immediate risk but I wanted to know if I could be tested for the cancer gene that is talked about. Unfortunately at the specialist I was advised that even though I was a slightly higher risk of breast cancer due to family history, my risk was not high enough for gene testing to be covered, and it could cost me about $5k to have done off my own back! So then I went on to say I didn’t want a mammogram (and I was under 40 so it’s not recommended anyway) and wanted an MRI. Again I was told I was not a high enough risk to have it covered by the Gvt so it would cost me $350 if I wanted it. OR they could do a breast exam then and there, and send me to have a mammogram while I was there, and it wouldn’t cost me. So they convinced me, and the next thing you know I’m 38 and having my first mammogram. Then the mammographer came back in and wanted to look at the left breast again. Then again… about 4 times in total I had my left breast squish and prodded around. Not exactly a good first experience. Then they sent me to have an ultrasound – during which the nurse advised that they were checking on something but that she could not see anything to be worried about. Still, she would call in the ultrasound doctor to take a look. They too couldn’t see anything. However, when I took everything back up to the specialist, he showed me some “micro calcifications” that he wanted to check out, and said “so we will get you in for a hook wire biopsy on Friday morning….here are the hospital admission forms for you to complete”. This was Wednesday. He wanted me in on Friday.
I didn’t know what to say…I never really was given any kind of option. There was no question – he just said this is what is happening. I was advised the hook wire was a piece of metal they would insert into my breast to ‘point’ to where the calcifications were so when they did the surgery, they could find them (because they could not be found under ultrasound). I read your story and agree with you 100% about the horrid hook wire going in. Being made to sit in a chair while squashed in a mammogram machine with three people around while one doctor is sticking a wire into your breast is not really the best thing in the world to have done. That was done 8:30am that Friday morning, and then I went back to my hospital room to wait around until my 1:30pm operation. The op itself was over and done very quickly and with very minimal pain, but I was surprised by the severity of what THEY called a “biopsy”. I was left with an incision over 4cms, which was only 12 days ago so will take time to fully recover from especially considering the chunk they appear to have taken out!
So when I returned the following Wednesday, I was very surprised to hear they found the cells to be cancerous. I had the same diagnosis – DCIS. However,…I’m a “lucky one”, or so I have been told. Maybe it’s because my doctor was a breast cancer specialist to begin with…not sure. But I was told it was probably one that would never have been seen on a MRI and maybe it could have been there for years and then sat there for years still without doing anything, but they have it all out now and with completely clear margins (so they SHOULD with the chunk they took out!), and it was stage 0 and very low grade (non-invasive) so I didn’t need any further treatment. NOTHING. No radiation,…no monitoring for 5 years… nothing.
All he said was he would see me back in 6 months for a check-up, 12 months for another mammogram, and then I should have yearly mammograms. So I was totally fine with that – to me, I didn’t actually have cancer at all….all they found was something that could one day become cancer but may not have, and they have removed it fully now anyway so there will never be a chance of that becoming cancer. I was told I potentially ‘dodged a bullet’ and should ‘go out and by a X-lotto ticket’.
STILL now, with the more research I do, the more I question whether in fact I SHOULD have further treatment such as a bout of radiation to be sure. I just don’t know. I mean, I am more than happy with the diagnosis and feel lucky because of it,….but still there are seeds of doubts. Should I be concerned or just go with it?
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Wow. what an eye opener. Have only started on this journey and I must re-read all of the comments before going forward!!!!!
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Thank You Donna for this website and your support,As you know I had a Lumpectomy May 30 of this year, for the removal of DCIS which was considered high grade in the right breast and radial scars removed in the left. I went to a breast center in Monmouth county at first, where they did 3 biopsies through ultra sound and MRI. I felt very uncomfortable with Doctor along with their sense of urgency. I ended up seeing Dr Capko at Sloan In NJ, who was a life safer. She did the surgery & got clear margins, But she wanted me to do radiation and take Tamoxifin. After speaking with you, I consulted with Dr Lagios. I received his report today, His report states Grade 2 and is not recommending radiation. Without Rads it would be 7.2% of it coming back in 12 years an d 3.6% with rads, But generally he believes radiation is better reserved for any recurrence, which is unlikely in any case he states. I will be speaking with him on Wednesday. I wanted to share my story with everyone, Because in the begining, I was so sacred and upset. Thanks again for your guidance and direction and for always reminding me that there was no RUSH and I had choices. If I does not feel right, DON’T until you do your own research. BTW his grade was intermediate.
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Hi Deb! Sorry for the delayed response as I was out of the country on vacation and had no internet access for 2 weeks! Thanks so much for sharing your story here! That is WONDERFUL NEWS and it is incredibly inspiring for other women to read…Dr. Lagios is well worth any out of pocket costs. He gives the most accurate pathology examination and report and this provides invaluable peace of mind when making difficult treatment decisions, especially in the light of tremendous pressure from medical professionals, family members and friends!! Thank you again and I wish you continued excellent health! 🙂 Donna
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Wendy, so great to hear all you have done and are doing before your next MRI! Thanks for sharing and for all your positive feedback. I look forward to hearing more about your health journey… You are a shining example for so many others! Be well and keep us posted! 🙂 Donna
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I don’t have DCIS. I was diagnosed IDC Stage 2B, Grade 3 in February 2012. I chose not to have chemo or a hormone blocker. Radiation was not deemed necessary. I gave up bad habits, went completely organic and nearly vegetarian, and took all the right supplements, I was good for 2 years but was recently diagnosed Stage IV, mets to bones. However, there are lots of ladies who did all the conventional treatments and still had theirs metastasize. I know a lady who had DCIS in all 4 quadrants of one breast. She had a double mastectomy. She took Tamoxifen. I don’t remember if she did radiation. She also was diagnosed in 2012 and is Stage IV now. Good luck Marie. I hope some other ladies chime in here.
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Donna- please you need to keep this blog under control. With all my respect to all the ladies and their experiences bad pr good. We as DCIS dont need to hear negative bad stuff. Especially us suffering from anxiety. The lady who left a comment just yesterday about stage 4 took me backwards and made me feel depressed. As a person who went thru hell since my diagnosis and starting feeling a bit better I dont need to read this. I dont need to be scared. Today i had morning reading at my kids schools as I committed last week to it but I wasnt myself and I have major anxiety that I tried to control between those little kids whol i was reading for. I have 2 young kids they are my hope and im hoping for good stuff. The future is unknown but please ladies if you dont have good stories to tell please dont post here on DCIS. I wish you all well but you understand the impact of ypur words on newbies and early stage BC????!!!! I stopped going on BC.org because of some terrifying stories. Im thinking to unsubscribe from this page if those stories keep coming to me without my will Thanks.
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One more thing i know that this lady was trying to help another lady making the right decision but reading these stories here is really sad for us DCIS. Cancer is very mysterious and complexe and its not that simple to give a to do list to cure it. Everyone have to go with his guts And good dr recommendations. Everyone respond differently to any kind of treatment whether conventional or aletrnative. A glass of green juice wont cure cancer. Its way more complexe than that. Id like to combine the benefits of both conventional and alternative. Try to eat healthy and active. But no guarantees that anything can work. We only hope and with faith we get stronger. My mom who is 60 just diagnosed with invasive colon cancer. After 1 year from my BC its pretty overwhelming for me and my anxiety over the top. My prayers to all the ladies here. Wish you all well ….
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Hi Nissy,
I agree. This site is meant for supporting one another in staying positive and reducing the stress and controversial overtreatment of much of the DCIS being diagnosed today. It’s about making the best decisions given our very unique, personal situations and finding more natural and uplifting ways to stay healthy and sane through our journeys. Keeping the FEAR of “what if” out of our decisions is vitally important. While there are no guarantees of any path (whether conventional or alternative or both), hearing about progression of breast cancer only reinforces fear for others who are working so hard to stay out of that fear zone. There are support groups and message boards specific to breast cancer and varying stages. I am so sorry for Charlene and her current situation, but this is not the right forum to post in. 😦
On a brighter note, I just posted a new “Stress Reduction” article on DCIS Redefined: http://dcisredefined.org/2014/10/08/reducing-stress-may-be-your-best-rx/
If it feels like too much info, I recommend simply watching this: “Lessons to Be Learned” Positive Affirmation Video: https://www.youtube.com/watch?v=8kutF_3Cn5w
Much peace, love, light and blessings to Nissy, Charlene and all, Donna
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Thanks Donna and Nissy! I read the comments posted yesterday and I immediately allowed myself to become discouraged. Keeping my mental state together is the most difficult part of a DCIS diagnosis. October is particularly challenging with all of the images of women battling breast cancer. I hope and pray that all goes well with Charlene. To all of my sisters with a DCIS diagnosis, stay encourage! Pre-cancer is NOT cancer!
Blessings,
Wendy
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One point perhaps about Charlene’s situation, and that is actually a point in our favor for those of us who opt out of overly aggressive treatment for DCIS (or in my case, a refusal to do a biopsy due to a very small group of microcalcs), is that she pointed out that even her friend who DID all the aggressive treatements, radiation, chemo, etc. still developed mets to her bones. So, in a sense, Charlene is somewhat saying what we’ve said, that it’s not always going to make a difference if you get involved in all the over treatment, you could still have a bad outcome. And that means we need to see doctors and pathologists who understand more about DCIS, pre-cancers, invasive cancers, etc. In December, I’ll be going in for my yearly mammogram since the 2011 mammogram which discovered the 9mm of microcalcs which I said NO biopsy and opted for follow-up mammograms only. I’ve dealt with anxiety every year about it, and I certainly hope the calcs have shown no change. It would be a victory for me as a patient who stood up for myself and didn’t rush into an invasive biopsy. And yes, October is the worst month for all of us being bombarded with constant “think pink” stuff. I hope and pray for the best outcome for Charlene, but it also won’t sway me from my current position of watchful waiting and even IF I have a biopsy, I know there’s no huge rush and I intend to consult with the best people in the field before doing anything. There’s no guarantees in life and all the “what ifs” won’t help any of us. I would consult with Dr. Esserman in at UCSF since I grew up on So. Cal and am close to that area and would be able to travel there and see her if things change in the future. For now, I’m happy and proud of my decision not to rush into even a biopsy, and continue to educate myself. Each person must look at their own situation as it is and take it from there. It’s all about education and filtering out fact from fiction. The scare tactics of the pink lobby must STOP! We need facts, not a constant barrage of bad stories, which may have many different reasons for being bad or being the way they are. Hang in there everybody, we’re all doing the best we can!
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I apologize. You are right. DCIS is pre cancer, not cancer. I did not intend to discourage anyone, only to share info. After all, my doctors weren’t interested in learning from or studying my treatment. Someone out there should have data about what we are trying. I was only trying to contribute.
I firmly believe that an organic diet with limited animal protein and avoidance of toxins (I don’t wear makeup and I only use organic body care products and baking soda.) will keep cancer away.
I know that Donna knows I had only the best of intentions. Don’t worry Donna. I realize I am now in a whole different place and will not comment again.
Good luck to all. No hard feelings.
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Hi Donna,
I think I am the only one writing who does not have breast cancer, however my daughter, 44, has just had lumpectomy last tuesday, She has DCIS high grade, no lymph nodes involved and the pathology report for surgery showed no cancer cells, I am assuming that means clean margins. She has decided that she will not take Tam but not sure about the rad treatment. This is in her left breast and I so worry about the damage to lungs or heart. I will direct her to this site and let her read the many comments. She lives 6 hrs away and works full time, as a mother this is the most difficult problem as I feel helpless to make my daughter better. I am 71 and upset that she has it and not me, after all I would still survive if it is slow growing and still be and elderly person! She is such a strong brave girl and I am just trying to find the best path for her even though she is an adult and will make up her own mind, I want to do as much research as I can that might be helpful to both of us. Does the high grade DCIS make rad more essential? I am also confused with the pre-cancerous vs. cancerous , some say one thing other Drs. say another thing. I am starting to come to the conclusion that 7 weeks of radiation is damaging, but just can’t make that leap yet. Please share your insight with me. Thanks so much, a concerned mother, Roz
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Hi Roz, I can imagine your concerns as a mom. You are doing an amazing job for your daughter just by doing the research and trying to be as informed as possible so you can help guide the best decisions. None of the decisions are easy. The problem is there is great controversy as to what DCIS is and how to differentiate the dangerous from the not-so-dangerous. The most important thing I could recommend is to have a 2nd opinion on the pathology from Dr. Lagios. Once it is determined if the DCIS is indeed high grade, then treatment decisions can be made from a rational rather than a fear-based one size fits all approach. Dr. Lagios really individualizes one’s recurrence risks as well as risk for future invasive event using the Van Nuys Prognostic index . Also, please look into the oncotype DX test. Please check out these resources and other info on my other website: http://dcisredefined.org/dilemmas/assessing-risk/van-nuys-prognostic-index/ Please let me know if you or your daughter have more questions. I am happy to help as I understand how difficult and confusing it can be. Blessings to you both, Donna
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Morning Donna.
What a sweetheart you are! Texted Missy this morning at work, like she isn’t busy! She mentioned proton therapy vs. rad, but I haven’t had a chance to research that yet. What are your feelings about this? How does she send the pathology report to Dr. Lagios and where is he or she located? Melissa in Chicago and so it seems to me they follow protocol. BTW, how are you doing???? Roz
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Oh, BTW, I am doing fantastic! Thanks for asking 🙂
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Hi Roz.
I found myself wnting to drop few lines here to say first that you are such a great mom to wish you were in her place and to give her such support. You are so loving and brave and your daughter is lucky. My mom is overseas and i didnt dare telling her I had DCIS a year ago because she wont handle it and she doesnt know anything. I will turn 43 years soon and have two young kids and its been bad since with ups and downs. Since you asked about rads. I did consult Dr.lagios after doing my 5 weeks course rads and he said he would recommend it anyWays bcos my dcis was > 6 cm. so i felt better that i did the right thing. However i should tell you that personally i had the worst reaction to rads. I had 3rd degree burn after the treatment was over and it was a terrible pain. I still live with rads complications such as constant pain in the right side where i had the dcis, my ribs my breasy my armpits always hurt!!! So you see that PERSONALLY radiation really left me with poor quality of life and God knows whats next. Im writing this as i wanted you to know my personal experience. Dr lagios might help ur daughter making the right decision looking at her pathology slides and mamogramms. All the best….
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Dear Donna,
So happy to get your reply, I am now researching proton radiation and there is also inspirational breathing during radiation, a Dr’ in Texas only gives radiation with this procedure. There is a hospital in Chicago that does that proton rad, so Missy might be very lucky to live there.
My heart goes out to you as I know there is side effects to all of these things. I believe that your age and Missy’s poses an all together diff. problem, she is single and was worried that dating would be difficult, I am so glad your support system with your own family is there for you. Please consider me a surrogate mom and will always be here for you as an elderly wise woman. LOLOL. I was a social worker and it is just in my nature to help ppl. Please feel free to use me when you need to share. Bless you young lady! P.S. I do work out all the time, singles and doubles tennis twice a week and work out at the Y also. I believe that working out is one way to keep oxygen to the cells and immune system. Roz
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Roz, you are very kind. 🙂 I do not know much about Proton Therapy. I hear commercials on the radio for it here in San Diego — which always makes me suspect! Here is an article I just read: http://www.medscape.com/viewarticle/778466 Good you are doing the research. I always ask the questions — is it better? are there harms? is it necessary? what are the risks of not doing any radiation? how much difference will it make? Dr. Lagios is awesome. His info is found on my resources page. He does all the work in getting the pathology slides from the hospital. He does everything remotely and then you have a 45 min consultation with him. Extremely valuable. Even though he recommended I do radiation (and I did not), I still found his wisdom to be very helpful!
Good for you to be so active!! You sound like you have a lot of wisdom about how the body works! Your daughter is very lucky! keep on researching and asking questions if you have them! Blessings, Donna
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Donna, than ks for your reply, I don’t know how to get to your page with the info about Dr. Lagios, I am a rookie with the computer and don’t know how to go there. I can hit a tennis ball but don’t how how do that, lolol. Hope your planning a nice weekend with your family and I will try not to bother you ( for awhile ) lol. Roz
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Ha ha — better to be out hitting tennis balls than maneuvering around websites!! Here is the direct link to Dr. Lagios’s website: http://www.breastcancerconsultdr.com/ For other info, just go to the “menu bar” at the top of the blog and click on the word of interest! I will be heading out to Atlanta on Sunday to speak at a big Food & Nutrition Conference. Spreading the good word about health through food! 🙂 Donna
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You will be proud, I did find that site and wrote done info for Missy!!!
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Hey Donna…I live in Atlanta and with love to connect with you if you have any free time.
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Safe travel!
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Thanks Roz. Wendy, the only time I could possibly have free is Monday evening. I will be at the Peachtree Westin. Would you be able to meet me there?
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Hi Donna, yes, I could meet you. I will send an email to your yahoo account with my contact information. Safe travels!
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Hi Donna…
I was going thru some pain for the last while in my armpits,ribs cage , chest and left breast( the healthy one that they found a benin cyst last May if you remember. And My DCis/ lumpectomy/ rad were in my right). So i went back to my oncologist who requested a ct scan for me. At the cr scan nothing new from a year except calcification in my left breast now…. I found out by coincidence the results of my scan as i kept calling my oncologist office and he wouldnt return my calls. Yesterday i went to the ER for palpitations and chest pain. And this is when i asked the dr there to tell me about my results. Im expecting a call from the oncologist soon as he was arranging some MRI for me in november as he s convinced thats the best screening for me since i have dense tissue… I left the ER anxious about living again the same nightmare in my right breast. Lumpectomy/ rad/ etc… And the pain, worries and anxiety…, any idea what would those calcifications mean?? A new DCIS in my left breast this time?? Any feedback from other ladies on this blog would be appreciated. Thank you..,
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Hi Donna. how was your trip? Found more details from Missy’s surgeon, Missy’s were calcifications also. The surgeon told her that the steriotactic biopsy itself removed ALL bad cells, the following lumpectomy pathology showed NO CELLS AT ALL! She see’s radiologist 2mrw morning, I don’t think she should do radiation and maybe the radiologist will say that ( who knows ), but she will be damaging good tissue I believe. I told her 3 important questions to ask along with her own questions. Did you ever have Oncotype DX??? Have you ever heard of the biopsy itself removing the bad cells?
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I live in England and my DCIS journey began 2months ago with blood discharge from my right breast since then I have had mammogram ultrasound which showed some calification I have a core needle biopsy which came back Benign however the results of my blood discharge was C4 suspicious. 3 weeks ago I had a major duct excision and results showed pre cancer cells and small amount of cancer cells. I now have scheduled ultra sound cans for my armpits and my left breast. The consultant has booked an operation for the 17th Nov to do lumpectomy or an option to do mastectomy.
I have been relatively healthy all my life but have been sedentary over the past year and gain weight I am so confused, reading this blog is so useful but I have a list of questions for my pre op appointment on the 6th. I could do with some advise I feel I’m on this cancer pathway and need to establish some control over what is done to me. I am very scared of what lies ahead.
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Hi Samina,
My story is very similar to yours. I was diagnosed 5 months ago after noticing a discharge in my right breast. I had a lumpectomy in June and my doctor is recommending a mastectomy, but I am in the process of detoxing and getting a second opinion after I finish my detox journey. Have you had an opportunity to research getting a second opinion? Keep in mind DCIS is not invasive.
Blessings,
Wendy
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Hi Wendy
Thanks for getting back to me I spoke to my consultant today I have invasive cancer cells at grade 1, I’m seriously thinking of going down the mastectomy route I couldn’t cope with have further operations as I have young children. I am trying to increase my alkaline levels and incorporating element of the Budwig protocol – cottage cheese and flax oil. Invasive cancer is very rare in DCIS cases. I just feel I don’t have enough time to explore other options between my appointments. This journey so far has been difficult. Find this blog very useful .
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Hi Samina,
I can understand how you feel. Receiving a cancer diagnosis is very frightening. Your heart will guide you to the scenario that is best for you. I think the most important thing is to gather as much information as you can so that you are prepared for whatever decision you decide to make.
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I have been diagnosed with DCIS with a micro invasion. Just two weeks after that they found another DSIC in the same quadrant of the breast. I was rather disgusted how conventional doctors treated me and am seeking help with a naturopathic doctor. Honestly, it is too expensive to continue, but I do believe the body has the ability to cure itself. I am stuck now with the tough decision of surgery or no surgery. I have already made up my mind that radiation does not seem to be the answer. There is not only one answer and one cure. Environmental factors, stress, diet; everything plays a role in reoccurrence. I am glad that I found this blog. I´d like to keep in touch with you courageous ladies. I am doing Breast Protect instead of Tomoxfin. No side effects and all natural….
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Hi Wendy
Since we last spoke I have been diagnosed with invasive cancer mucinous carcinoma grade 1 and DCIS high grade I have my central excision tomorrow hoping they able to remove it all and my margins and lymph nodes are clear .
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Hi Samina,
It’s nice to hear from you. I will say prayer that all goes well with your surgery and that you get clear margins! Please keep me posted.
Blessings,
Wendy
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Hi Donna,
I’m just checking in with the latest results of my ongoing refusal to do a biopsy of a cluster of microcalcs which were discovered in 2011. I had yearly follow-up mammograms in 2012 and 2013 with no change in the calcs. On Friday I had my one year follow-up for 2014 and the report says it shows a “slight increase” in the calcs. So naturally, this time my doctor put the big pressure on me to do a biopsy, with me reminding him that I’m very aware of the gray areas involved in potential diagnosis of DCIS, with overtreatment and unnecessary, invasive procedures. He said, “what do you intend to do?” To get him off my back, I have agreed to a 6-month follow-up mammogram. I asked him , “what does slight increase mean? There are no specifics in this report as to number of type of increase..” He didn’t respond to that question. I told him I felt the report was quite vague, with no specific numbers, measurements, just “slight increase” in the microcalcifications. At this point, I really don’t know what to do regarding my refusal to do biopsy. I suspect I’ll end up forced/pressured into doing it due to this “slight increase” issue. And that’s once again part of the fear factor that we are all pushed into with the panic and lack of good science and lack of support from our doctors.
He then asked me, “If it’s cancer, don’t you intend to treat this?” and I said, “not without an expert second opinion”. He sort of glared at me and tried to panic me into action, saying, “this could save your life”. Luckily, I’ve done my homework about DCIS (if that’s even what it is), and the “save your life” type of attitude/wording doesn’t influence me. Just as you are, I am a huge admirer of Dr. Laura Esserman and Dr. Lagios. Certainly if I have a biopsy and it reveals cancer, I will definitely have Dr. Lagios do a second opinion look at the pathology to determine future course of action. I am absolutely going to stand strong against UNnecessary lumpectomy, mutilation of my breast or radiation. I have a neuromuscular health condition that would be hugely impacted by radiation. I’m naturally unhappy that there was any change in my calcs from 2011, although I wasn’t hugely surprised about it. . I intend to get the films to see for myself just precisely what and how many this increase is, as the report was totally vague. It has crossed my mind that it may be extremely easy to claim a “slight increase” in order to “fear” me into a biopsy, since i have been so staunch against it (and probably one of the rare patients who has refused biopsy). . Perhaps that’s just my own suspicions kicking in, that they might claim some “slight” increase just to force me into a biopsy, but I think it’s possible.
He also tried to downplay how problematical/invasive a biopsy can be, making it sound like a walk in the park. But I’ve read enough descriptions to know that most certainly is not always the case and can be quite an intense experience, with potential side effects like bruising, pain, etc. Anyway, that’s where I’m at for now and will check in again at six months to update on what my plan of action will be. I continue to stand strong in my belief, from all that I’ve read and researched, that there is massive overtreatment going on in the U.S. with microcalcs. Also, the fact that there’s only been a “slight” increase in my calcs since 2011 seems to point to it being either a benign or a non-aggressive condition that does not require intervention. But like so many of us here, we’re between a rock and a hard place and don’t really have support across the medical profession to help us make alternate decisions, such as “watchful waiting”. But I don’t intend to throw away all that I’ve learned from you and other sites and will put into effect whatever I can to help myself. I want to thank you again for being here for those of us who are truly INFORMING ourselves and attempting to make logical, sane decisions in an insane environment. I wish everyone a beautiful holiday, even though I know many of us are stressed and worried and going through rough individual experiences. Stay strong, hang in there everybody!
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I understand all your feelings about what you are going thru, as my daughter has the same exact thing. She however did have the biopsy for the calcifications and it did show high grade cells ( Comedo Necrosis ), which are more aggressive cells. She had seven weeks of radiation and just finished. They could find very low grade cells if you ever do have this bioposy in which case it could put your mind and decisions about this at ease. My daughter however has refused the protocol oh 5 years of tamoxifin and I totally agree with that. Hope this has helped you somewhat.
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I have just been diagnosed with duct al cancer. And l will not be taking radiation or surgery. This system is destroying women’s breast with cancer that can be controlled by lifestyle changes. But it’s a choice and women need to stop making these surgeons rich and using the doctors to abort there breasts and saying l am fine after. Maybe you are . Question do you want to look strong to your love ones that you did it that way or are you to lazy to work for controlling and taking true healthy control of your lives. To me women seem so weak and we keep giving survival breast cancer patients teddy hug and telling them how strong they are. abortions is if you are on your last legs. And your general chemistry is all out of whack indicating death is soon. So stop Stop Breast Abortion or keep killing women like us who are the true survival breast cancer women. We keep going and use ever tool and health to avoid letting the breast abortion take are true babies and lives. Think about it and get off your cushion and quit looking for the easier softer way. Cancer isn’t controlling nature or the one who has made millions campaigning the pink ribbon story. I hope l am alone with the real truth. I have the cancer and who cares. I live in the moment. I sure in the hell did not need cancer to do that. P.s. please stop acting like girls marching for freedom when you haven’t even learned to free yourselves from the breast cancer stupid .
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I have been trying to find the study mentioned by Dr. Northrup, as it could be very interesting. I n an interview here:
http://articles.mercola.com/sites/articles/archive/2013/04/21/breast-health-tips.aspx
she says
“[Gilbert Welch] pointed to a study [from] way back, of women who died in car accidents in their 40s. They sectioned their breast tissues and found that 40 percent of them – this is normal healthy women dying in car accidents – had evidence of ductal carcinoma in situ that was never going to go anywhere. This is the big dilemma,” Dr. Northrup says.
I can’t find Dr. Welch saying anything about such a study. Also, who conducted the study? Not Dr. Welch, not Dr. Northrup. Saying it’s “From way back” is too vague. We have to be careful of listening to who says what and whether it’s scientifically valid or more in the interest of selling books and self-help programs.
That said, if you do have more information on this or other studies of women post-mortem, we would all like to know about it. Because underneath it all, we’re asking ourselves, “If I did nothing at all, would the DCIS just remain dormant?”
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Hi there. I too tried to find this study as I have seen different #s quoting the autopsy findings. Here is another article from Dr. Northrup: As H. Gilbert Welch, M.D., M.P.H., points out in his book Should I Be Tested for Cancer: Maybe Not and Here’s Why (University of California Press, 2006), routine screening too often picks up things that we will die with and not from.
That’s the case with too many so-called “breast cancers,” which are really ductal carcinoma in situ (DCIS) – not invasive breast cancer at all. Welch points out that in autopsy studies of healthy women in their 40s who died in car accidents, a striking 40% had evidence of DCIS in a least one area of breast tissue. In the vast majority of cases, this cellular abnormality remains dormant in the breast tissue. And some of these cellular abnormalities even go away, similar to about half of pap smears indicating the presence of pre-cancerous cells, which revert to normal without any intervention.
http://www.lifescript.com/health/centers/cancer/articles/shattering_old_beliefs_about_breast_health.aspx
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Hi again Jeanne….I think I found the study: http://www.vaoutcomes.org/papers/Autopsy_Series.pdf
I find it hard to make sense, but here is where it mentions 40%: “If the prevalence of DCIS is 40% (the highest reported prevalence)”
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Hi Donna,
Hope you are well.
I live in the UK and recently was diagnosed with low grade DCIS following a routine mammogram and biopsies. A lumpectomy was arranged for 30/12/15 and I had all the usual run-up to the surgery. I met the surgical team, had my surgical stockings on, allocated a bed in the day ward etc. etc. Standard procedure prior to the surgery is to have a wire guide placed in the breast to show the surgeon where the cells are located. Mine were 4mm when analysed. Had ultrasound, mammogram and several e-rays and the radiographer could not detect the cells to the point where the wire guide could be inserted. The surgery was cancelled there and then. I have been left in limbo. Consultant says they will not now operate but will “watch and wait”. I am unsure how I should feel about this. Relieved that surgery is not necessary but there again there must be cells in my breast which would be better off not being there. I also feel a bit of a fraud as far as my family and friends are concerned. It seems to some of them that one day I had cancer and then I didn’t. Not sure whether I should be relieved or concerned. Where are the cells!!!!!
Kind regards
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Hi Trish,
Seems you had an angel looking over you! The cells are often so microscopic that they do not always appear on imaging. If I were you I would see this is a blessing and a wake up call to learn all you can about DCIS (and overtreatment) as well as holistic health and risk reduction. In reality we all have pre-cancer cells and sometimes they come and go…..there is far too much alarm and overtreatment going on and the studies have come out to prove it. The anxiety and stress of the diagnosis and potential “cancer” cells is enough to start anyone down a dis-ease process. That is the most important thing I believe. I have found yoga and daily exercise to music that is inspiring to me to be most beneficial. Sleep is very important. Not worrying and having peace of mind is essential!! Please take the time to read through this website as well as http://www.dcisredefined.org Join our Pro-Active Breast Health Club: http://dcisredefined.org/proactive-breast-health-club/
and stay positive. I would recommend a dedicated breast MRI in 6mths. Mammograms are too good at finding calcifications and low grade DCIS — which is what is the cause of all the over-treatment! Round and round we go! I say stop the merry-go-round and create a better ride!
Best wishes for your health and happiness. Please stay in touch.and feel free to ask any questions you may have. There is a lot of confusion out there regarding DCIS. I have been studying the topic for 6 years and have been pioneering my own path — and it is working just fine! 🙂 Donna
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I have recently been diagnosed with DCIS, and are now forced by my GP and surgeon to have a lumpectomy done. I have started to have second thoughts about this, after seeing a program on TV about a money making scheme and overreacting in treatment for DCIS. That is exactly why I started doing some research online and came across your blog.
Would you say I shouldn’t even start with a lumpectomy and that I can heal my body with clean eating? I am very fit and active and live a very healthy life. I am 44.
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Hi there…I would say….fantastic that you started researching and found my blog….there is a lot to take in at first. DCIS is not an emergency and you have plenty of time to gather info and make educated decisions individualized to your exact situation, cells, risk tolerance, etc. I too was 44 at the time of diagnosis and very fit, healthy and active. I was so naive that I had already had a “lumpectomy” surgery (wide excision) before even being diagnosed with DCIS. I made this blog to warn other women about what can happen — and to provide guidance and resources that can truly make a difference in how you perceive and treat DCIS. Unfortunately there is really no definitive way of knowing what kind of cells are in the breast (grade, size, extent of DCIS or invasive) until the tissue is removed and then examined by a pathologist. I would always recommend a 2nd opinion on pathology — even if it is just a biopsy. See Dr. Lagios under “resources.” Even true invasive “cancer” is misunderstood and can be healed with right thinking, eating and living. Clean eating is only part of the equation….a DCIS diagnosis is a wake-up call to an “Extreme Life Make-over.” I am now offering personal one on one coaching if that is something you are interested in. I also have a ton of insights and resources to support you on the website I co-created with Sandie Walters: http://www.dcisredefined.org Please take the time to review the excellent info and let me know if you would like more in-depth coaching or guidance. In love, peace, health and light, Donna
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Dear Donna
I live in Ireland and have just come across your blog – I recently started radiotherapy but stopped after the first 5 sessions due to pain – and the fact that I really felt it was not the right thing to do. Particularly after talking to a close friend who suggested I look at building myself up through diet etc.
Last June I was diagnosed with ‘high grade DCIS’ – after a routine mammogram, and needle biopsy (awful). I was in a state of shock. I wasn’t sure I wanted to go ahead with a full biopsy. I was in a state of shock and had two lumpectomies (as the surgeon did not get a clear margin first time around). I did ask questions about radiotherapy but obviously not enough. It has been stressful deciding what the right course of action is. Trying to find ‘another way’ is so hard and the standard treatment here is 6 weeks of radiotherapy. Whole breast. As it is my left breast there is a risk of damage to heart, lungs and ribs. I have spoken to a number of people in the healthcare system who have all recommended radiotherapy but that’s exactly it. They are in the system.
I met my consultant on Monday, telling him I did not want to continue with the treatment, siting my findings. He said he thought my pain was psychosomatic and asked me if I wanted something to calm me down (something like Diasopan). I was shocked.
I asked for a second opinion and he has referred me to another consultant but my mind is made up about stopping radiotherapy. I will focus on my diet with the right kinds of foods, exercise, acupuncture and other measures to help my mental wellbeing because the stress of deciding to go with radiotherapy or not has been worse than having the initial surgery.
Thank you for your blog, Donna – it is so heartening and informative to read as well as the stories of the other women. Thank you all. It is, as someone said, us ordinary woman, going through this, who are willing to explore, learn and share, will find the way forwards.
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HI Claire….I can imagine your turmoil….so good you are listening to your intuition and searching for better answers. I would recommend a 2nd opinion on the pathology with Dr. Lagios. Not sure if that is so easy being overseas….maybe there is a pathologist he can recommend in Europe. You could try calling him first. His info is on my Resources page. We have a family friend from Denmark who had DCIS 10 years ago and they did not offer radiotherapy at the time for DCIS. She has been fine and it has been 10 years with only surgery and no radiation. Also I woould recommend reading books like “You did What, Saying NO to Conventional Cancer Treatments.” Hollie Quinn had invasive breast cancer and refused radiation….a beautiful story and offers insights into what she did instead…mainly nutrition, herbs and lifestyle. My other website I co-created with Sandie Walters has a ton of great resources as well: http://www.dcisredefined.org and finally there is the “Alternative DCIS” Facebook group: https://www.facebook.com/groups/548606558617827/ Angela is the women who started this group and she lives in Spain and has many great resources. This is an active group that can help tremendously on your new better, healthier path! Welcome to the wonderful world of healing…from the inside out! 🙂 Donna
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Dear Donna
thank you for sharing your story giving so much hope to other women like myself.
My name is Bretta I am 50 years old I am living in the UK, I am married without children.
I have been recently diagnosed with DCIS in 3 areas of my left breast, they found some calcifications inside the milk duct and 2 other parts. No history in our family of breast cancer.
These results are low grade and intermediate grade (left breast only).
The hospital surgeon and a nurse are trying to convincing me to have a full mastectomy and so my GP saying that if it spread then the cells can travel into my entire system and also my brain, etc …
I have never been a vegetarian but I have started to cut sugar, and all meat except salmon .
Can you please give me an advice …. I don’t know anything about DCIS … I have just learned what it is from cancer websites and other general ones, but ….. where do I start this battle ?
Please write to me.
Thank you so much!
Bretta
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Hi Bretta, So sorry to hear how the doctors are scaring you. There is a lot of information and resources both here on this site and on DCIS Redefined — a site I co-created with Sandie Walters who is an excellent researcher. please visit http://www.dcisredefined.org and let me know if you have questions as you investigate. A 2nd opinion from Dr. Lagios is highly recommended but maybe he can recommend a pathologist in the UK for you to work with. His website info is listed on the resources page. You may also want to find another Dr. in the UK that is more up-to-date on the over-treatment issues of DCIS and will be less fear-based. Please look at what Professor Michael Baum from the UK and Peter Goetzche from Denmark are saying about the problem with mammograms and over-diagnosis. Also, please watch the promise film: https://vimeo.com/ondemand/6754
The doctors who scare and pressure women like you with low-int grade DCIS should be ashamed of themselves.
This is your opportunity to become educated and empowered!
Much love and blessings,
Donna
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All, you may be interested to know that I had a consult with Dr. Shelley Hwang at Duke University Hospital in Durham, NC. She is in the camp with Dr. Melvin Silverstein and Dr. Esserman, in California, of taking a more laissez faire approach to DCIS. This being said, Dr. Hwang still recommended a skin-sparing mastectomy for me because of the size of my HIGH GRADE DCIS compared to the size of my breast — that the deformity would be too great, etc. However, she was assuming I would opt for post-lumpectomy radiation, which I would not, which further deforms the breast.She also informed me that leaving ANY DCIS cells in the breast, if margins were not clear (although she does accept tiny margins as sufficient — 1-2mm) would leave me subject to a later invasive cancer in which case I might have to take drugs and get a lymph node removed. So, for those of us with HIGH GRADE DCIS, we are in a different category altogether, apparently, with less options for successful treatment. If others with high grade dcis want to chime in, I’d welcome your experiences!
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hello, thank you for the support and info. I too am high grade DCIS, and still looking at alternatives to my almost certain mastectomy. DX in November. I just saw Dr. Hwang last week for a second opinion on my DCIS. Really liked her passion and empathy. She is about to start the COMET trial for women with up to intermediate grade DCIS, which will study the efficacy of using Tamoxifen and active surveillance. Docs at Fana Farber and U Texas are also participating, they have $13 million grant to do it.
Turns out I am not a candidate for the trial, because my DCIS was upgraded by her pathology team to high grade (it was intermediate grade according to the path at my home doc in DC). But in spite of this, she says if I felt ok with the risk, i could try the Tamoxifen and come back to her in 3 months for an MRI that she would compare to the one I had at my home doc in November. She thought some of it might recede. Active surveillance with Tamoxifen.
She estimated that my personal risk on this plan is 15% for invasive developing over 10 years. Trying to decide if i can live with that uncertainty!!! With a kid and busy life. I know that no matter which decision I make, it’s unlikely i will feel totally at peace.
I have two sites biopsied with core needle, both ER+PR-, although one spot is only weakly positive, so she was inclined to suspect that spot would not respond to the Tamoxifen which only really works for ER+….
It is definitely beyond weird to be told you have something that can’t be seen on the mammogram (I got tiny discharge with a self exam), but that you need a mastectomy.
She and my Washington DC home doc agree lumpectomy isn’t workable due to how much of it i have relative to me being just barely A cup size… it would take almost half the breast which is not workable cosmetically in any viewpoint, so my options are to try the Tamoxifen and hope in 3 months it recedes, or do a mastectomy. i’m trying to make up my mind. I am also trying a totally plant based diet as there is lots of research in that area too! Feeling better and more energy already eating better (I was already pretty healthy eater, but gave up all animal products) Best of luck and I hope you are doing well on your journey.
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mammograms CAUSE cancer… not “pre-cancer,” but cancer, and all of these mammograms are total insanity, a working of the system for unreasonable financial gsin
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I have been diagnosed with dcis. A few weeks after the needle core biopsy I was up graded to dcis with microscopic invasive cancer. I’m thinking how did the cells leave the milk duct? Then I decided to search and research and I read about seeding. Now I first had dcis. After the core biopsy and going into the milk duct I now have invasive Vance. And over and over again my surgeon reassured me no cells can get out this way. My question to this day. Is how did they get out and I have read again and again dcis is non in vasive so where did the microscopic cancer cells come from? Confused and frustrated haven’t had surgery yet. Please send me an email or call or write I need advice!!!! Janelle Abbott
608-882-0581
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Hi Janelle, So sorry to hear all that you have gone through. The core biopsy does not always show everything. It is possible and likely the invasive cancer cells were already there. According to Dr. Michael Lagios who is a 30 year renowned breast cancer expert pathologist, DCIS can not become invasive even if you chop it up or cut through it. There needs to be another molecular change. The core needle biopsy is quite an invasive procedure and could potentially be the catalyst for more harm and injury to the breast which can be a causative factor in breast cancer initiation. I would recommend a 2nd opinion on the pathology with Dr. Lagios and have him discuss with you potential next steps / options. You want to be absolutely certain they have the correct diagnosis and to what extent. I am available to talk by phone if you want to schedule a time. I am on Pacific time. Sending you a big hug, Donna
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PLEASE watch this video.. I FEEL for you ..Our Medical System is Corrupt…and me and you have been a victim…!!!! https://www.youtube.com/watch?v=Eu5JJQgSzbY
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Finally watching this video now….it is SICKENING! I understand this nightmare very well as I watched how psychiatric drugs and painkillers almost took my mother’s life and thankfully she was able to get off everything and come back to a healthy life. Psychiatric drugs destroyed my uncle’s life and eventually killed him by overdose. Very corrupt and dangerous system, especially for those who are naive and vulnerable and do not have a strong advocate. Thank you for sharing this video…I have seen a few like this, but this one is excellent. I hope many people take the time to watch this video and wake up… and REFUSE to become a victim. Those of us who know better and choose health through natural, holistic means should not be considered “alternative.” This is so backwards!!!
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Is this blog still active?
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Yes, click on “blog” in above menu to read latest posts
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Donna, Thank you so much for sharing your journey. I also have dcis and continue to do research and challenge my Drs treatment recommendations. It’s nice to know there’s other women bucking the system. We have to advocate for ourselves!
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YES! I am so happy more women are getting educated and feeling empowered!! Thank you Elizabeth!! 🙂 Donna
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I just came home from a lumpectomy . Again I had an excisional biopsy and they needed to go back for clear margins. I suspect that there’s a lot of bullshit going on. I pretty sure that if you have the exvisional biopsy at a hospital with pathology facilities on the premises they assess the margins when you are on the table and the surgeon gets out the rest right there. No need for a reexvision. If this is true I will raise holy hell. Are we the victims of greedy surgeons and hospitals. I hope not. Love to hear from you. Check out the COMET trial . Stella
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I just watched this extremely insightful video which sums up that we are victims of a “medical mistake.” The problem is in the looking for these “pre-clinical cells” and thinking we can cut them or radiate them away. False premise to begin with so no matter what you do, it doesn’t make a difference. Best to wait to see if any symptoms or real cancer arises. Early detection has made no difference on survival. Most of us diagnosed with DCIS due to screening mammograms have been over-treated and harmed!
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Hi! I was diagnosed with DCIS in November by core biopsy and have not yet had surgery. My surgeon has offered me the option to attempt to first shrink my (by MRI) 2 cm by 1.5 cm by .8 cm (hopefully low grade) DCIS by use of Tamoxifen and MRI monitoring before surgery. I am 47 years old with no clear family history and negative gene testing. I’ve been told that studies are now being done by Dr. Esserman’s team in San Francisco where they are doing Tamoxifen plus close monitoring in post menopausal women – but that for me being premenopausal that it’s considered riskier to skip surgery. Wondering if anyone here has attempted to reduce or eliminate their DCIS with Tamoxifen?
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Sorry but I would never use Tamoxifen–have you read the research and statistics on this drug? Please do. I opted out of all treatment several years ago and have no symptoms. I changed my diet, my mindset, and do constant research on a plant-based diet. Donna’s journey is great but other websites deal with healing breast cancer (which DCIS is not) through natural means. Try chrisbeatcancer, wellness mama, breast conqueror (Veronica D.) “never fear breast cancer again”, the truth about cancer, forks over knives and many more. Honestly, I do not trust the medical complex. I have a doctor who totally supports me. Good luck.
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Thank you so much for all the great resources to help me battle my fears. As for Tamoxifen, I honestly don’t know where to go for stats on it. I’ve been told it reduces recurrence by half (and recurrence is 50% invasive), but I believe those stats to be for studies of all breast cancer, not DCIS specific patients. I know the possible side effects and my oncologist (who I met with only once) has told me it’s quite individual, and that taking it for some time gives a benefit better than never taking it, so even if I stop it early that’s still better than never taking it. It’s my surgeon who has suddenly said I could do Tamoxifen before surgery, and I don’t know if I am going to go for it since I’ve now gone several months with no treatment while trying to decide if I’d want a mastectomy or not (was initially told that is a good option if I’m going to refuse Tamoxifen). It took until last week to realize that my gut is saying no you can’t do mastectomy, at least not at this juncture. Did you never have surgery (lumpectomy) or opted out of treatment after lumpectomy?
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I did NOTHING! Except to change my diet and lifestyle. I am really an extremist when it comes to rejecting the current medical advice. I had no surgery, no radiation, no drugs–in case that wasn’t clear. Susan Sommers has a bunch of books about her breast cancer experience–eye-openers. I believe that having a mastectomy for DCIS is a sin. All the research I have done points to cancer being an immune mess up by your body because of our crazy food and lifestyle. It cannot be cured by surgery–only the symptoms are removed. If people do not change what they eat and their weight and their stress–it will eventually come back in another form. I am also very brave–I want to be responsible for my body–not some ill informed medical monopoly that may or may not be in league with the Big Pharma (pharmaceutical companies.) (BTW, there are documentaries on the shady connections between the American Cancer Society and drug companies) .Tamoxifen is a proven cancer causer (i.e. cervical cancer). Now I had the lowest “safest” form of DCIS. After the shocking news, the surgeon (why was I conferring with a surgeon first I asked later) tried to rush me into surgery, drugs, and radiation. I cannot tell you how panicked I was but I researched and I prayed and I said no. In fact, they were shocked that I refused treatment (they tried to pressure me) and I went back to St. Jude and got all my records including the diagnosis, needle biopsy, mammograms etc. I don’t want to overwhelm you but there is so much on the internet about DCIS, Time Magazine did a cover story a few years back “What if I Just Do Nothing?” and the topic is very controversial. Now on chrisbeatcancer website, there are testimonials over and over of women curing (without current medical procedures) their own breast cancer. So if they can do it, I will too if I ever get it. In one study I looked at–shockingly–the survival rate of DCIS women who did nothing had a longer survival rate than those who did surgery etc. It may never cause you problems because it is intact. Just clean up the rest of your body and protect yourself. FYI I radically changed my diet and take supplements (such as Turkey tail mushroom capsules and Chaga) known to protect against breast cancer. There is so much out there. If you want a list of books to read, let me know. But the best I read is Anti-Cancer: A New Way of Life, by a French doctor (neurologist?) who was given about 6 weeks to live and who cured himself of brain cancer and changed his life. There are hundreds of stories out there like that–so why should we fear DCIS? I think the medical profession has made FEAR its ally when getting women to remove their breasts for safety. I do not think it is safety but panic. Anyway if you would like to receive more references, let me know–but there’s a whole world out there. Google it! And go to those websites I told you about–most have a question and answer offering–and ask them where to start. Blessings and take responsibility for your health back from the doctors.
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Hi Sherry! Thank you SO much for your long reply. I admire your faith and how well you’ve worked to make yourself healthy. Unfortunately, or fortunately, depending on one’s viewpoint, I’m medically trained. I’m a psychiatrist, though my prescribing practices are very conservative and I am more of a therapist than anything else (that is my main interest). I certainly am not in any way “in league” with any behind the scenes of Big Pharma. It is very hard to know what to believe. I have a tough time putting my faith in something that does not have large controlled studies to support it, but I also understand that some great treatments may just not have been given the financial backing to fund those kinds of studies. I have read the Time Magazine article, the study from 2015 in question (4 times), Esserman/Huang’s editorial, several other media articles, and some other studies rather randomly found. Some of the media articles mis-quote the 2015 mortality article. Of their cohort of around 90,000 women over 2 decades of DCIS diagnosis, only .02% of them had no surgery. So they never separated out that group for any analysis (they couldn’t have with such a small number). It showed no difference in mortality rates between those who had lumpectomy versus lumpectomy and radiation versus single sided mastectomy. And that did make me think okay why am I considering mastectomy then? I had to come to the conclusion that the reason to do mastectomy would be if I’m too scared to deal with monitoring and the possibility of later being told I need chemo. The author of that 2015 article concluded that for the small percentage of women who are dying at some later point after DCIS diagnosis may have a particularly aggressive brand of breast cancer process that they aren’t even picking up on mammogram/MRI (almost half of those who died did not actually have a visible recurrence), so he ended that article rather darkly saying actually DCIS acts similarly to small invasive breast cancer masses in the sense that the same risk factors lead to worse prognosis and the fact that they haven’t figured out how to know which are the small number of really aggressive ones. That article left me just as stressed, if more clear about what they don’t know.
I’m in San Francisco, and I finally got UCSF to call me back and schedule an appointment with Dr. Esserman. The woman in the article mentioned in the Time Magazine article is 60 years old at the time of the writing of the article. I have a feeling I will be given different advice because of my age (47) and also that Tamoxifen will be encouraged. The good thing is that it seems that radiation is not recommended nearly as often now for DCIS – and it has not been recommended for me either. My friend’s wife had low grade DCIS 8-9 years ago and was not told to do radiation, and at the time they were told that that the standard of suggesting radiation will be changed soon (it was, for low grade DCIS). She had lumpectomy, had to go off Tamoxifen after 3 months due to liver enzyme elevation, has had no recurrence. She tells me that she went to support groups of other DCIS women and many of them had stopped Tamoxifen due to side effects.
I have been swayed multiple directions now by my surgeon, and this suggestion to do Tamoxifen pre-surgery is a new twist. I’m confused about it and thought I’d see if it was even known about here. I do get that most women on here are refusing medical treatment (though the earlier posts a few years back had a different flavor).
As for me and my health – I’ve had a lot of depression and anxiety. Not overweight at all, though I eat a lot of cheese and other dairy products and in the last few years I stopped exercising. My friend swears by cactus extract for cancer prevention and immune boosting. Have you heard of that? It’s a dizzying amount of information out there…yes I’ve been googling and yes I agree about the praying and listening. It’s funny you said mastectomy for DCIS was a sin because I was literally just saying to myself today that I was pretty sure it’s not a sin to refuse mastectomy for DCIS. 🙂
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Amen to all that you have decided to do and have done. I agree, wholeheartedly….
“It’s funny you said mastectomy for DCIS was a sin because I was literally just saying to myself today that I was pretty sure it’s not a sin to refuse mastectomy for DCIS.” 🙂
Me, too! Great report!
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Hi Ginny,
For some reason I was just notified of your comment on my comment even though it appears you wrote it 2 weeks ago. It’s pretty strange timing to have this thread from 2 years ago brought back up because tomorrow will be 4 weeks from my double mastectomy with reconstruction. I did have DCIS but was later found to also have stage 1. It took me a long time to come to the decision and it was hard. However so far I have to say it could not have gone smoother. Please let me know if you want further information.❤️
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Hello,
Thanks to everyone for all the great information on dcis. My wife Lori was diagnosed with dcis grade 3 that is 6mm on oct 14th of 2020. She had atypical ductal hyperplasia in 2015. I told her I’d support her in any decision she makes as far as treatment , surgery, and aftercare go. At this point she is leaning towards a double mastectomy. Her dcis is estrogen receptor positive as well. For Her reconstructive surgery she wants to use her own fat from her abdomen area and have a tummy tuck. She was supposed to have surgery today (the day before Thanksgiving 2020) but her surgeon is covid positive therefore it has been pushed to dec 21. I’m wondering if being a grade 3 6mm dcis will it spread before her surgery? I’ve read that it can take 3 years but I’m not believing everything the internet tells us. It’s been very exhausting and scary reading every single day on dcis since she’s been diagnosed. She is currently under treatment at the University of Minnesota her surgeon’s name is Dr tuttle, and her plastic surgeon’s name is Dr Choudry. Both seem very good.she was also just accepted at the Mayo clinic in Rochester Minnesota. the only problem with that is it’s an hour and a half away from us in Blaine Minnesota a suburb north of Minneapolis. However I do know the male clinic is very well sought after and we want the best treatment for Lori we can get. she has been exploring every option including holistic as well. The Mayo clinic also said that her first appointment with them would be December 21st. my other question is do you think we would have time to go to the mail and get basically our third opinion on this? The first one was through health partners and the surgeon had zero time for her. The second one is now like I said through the University of Minnesota and they seem like they really got their s*** together.However like I said her surgery has been pushed back and that worries us. Just not sure what to do any advice would be awesome at this time thanks for listening.
dustingraves72579@gmail.com
loriduvall12@gmail.com
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Thanks for the great reply Sherry!
Hi 4goodness and all, here is a good link with studies and alternatives for tamoxifen: https://dcisredefined.org/choices/tamoxifen/
Yes, UCSF pushes tamoxifen! Did you read my blog post with visit to Dr. Esserman:
I never took it. I have taken I3C, DIM and now sulphoraphane. Best way to deal with hormones is reduce stress, quit meat and dairy and stay away from xenoestrogens as much as possible! https://womeninbalance.org/2012/10/26/xenoestrogens-what-are-they-how-to-avoid-them/
My checklist for breast wellness is here:
Peace, Love, Namaste, Donna
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Donna – Thank you so much for sharing your story and creating this site. Your journey and all you went through is informative and provides insight and knowledge of the options to women. I am new to the site and just being diagnosed with DCIS, but I will continue reading your content and info. I am anxious about asking about Active Survellance when I see the oncologist for the first time. I’m already prepared that it will be looked as a poor choice. But this is my body. I’m not ruling out lumpectomy just yet….but I know I have OPTIONS now….
Thank you again for establishing this over 10 years ago and keeping it going. With more technology more diagnosis of DCIS so unfortunately, I think more women will need this resource. I read an article this –> The National Institutes of Health estimates that by 2020, more than 1 million women in the U.S. will be living with a DCIS diagnosis, compared to 500,000 in 2005.
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Was just diagnosed with dcis they want me to have surgery.
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Sorry I did not post your comment earlier. How are you doing? Did you have the surgery?
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Hi Donna. Thanks for sharing your journey. Do you have any updates after 2011? I am curious as to how everything has worked out for you. I’m 40 years old and just had my first mammogram. Nothing was found, but since I was having pain in my left breast, they did an ultrasound. Nothing was found on my left breast, but in my right breast they ound macrocalcifications in a cluster and they want to do a stereotactic biopsy, and leave a metal marker. But I am terrified of this simple procedure that other women have no problem doing, mostly because I’m scared of getting cut open, feeling pain, and I don’t know if a metal marker might be the cause of future cancer. Also I’m scared that they’ll say it’s DCIS and want to take pieces out of my breast, even if it’s something that might not ever develop into a life threatening cancer. Since Adrianna guided you how to stop cancer, I don’t understand why you still had to have to have a lumpectomy to remove tissue? Did changing your diet even help anything at all? And then after the lumpectomy they still wanted to take out the bottom half of your breast? Did they do that?
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Hi Staci, I have shared all my updates over the years via my “blog.” You would have to scroll backwards to read everything, but basically I refused all further conventional treatment as well as I never did another mammogram. I switched to MRI for 4 years, then SonoCine automated ultrasound for 5 years. All has been CLEAR and never any signs of anything wrong, despite being told I needed a mastectomy. My Dr. told me “Your breast is like spoiled soup.” It’s not worth keeping.” When I said no, she begged me to at least do 3 weeks of radiation. I said NO. Another Dr tried to convince me to take tamoxifen for 5 years. I said NO. The reason I had the surgery was because the mammogram and MRI could not decipher what was apparently growing — and the Dr scared me that it could be INVASIVE since I had left a positive margin (the DCIS was cut through) 15 months earlier. Fear took over for me and I thought all my holistic efforts were not working, yet in hindsight, I believe it did help tremendously….as the low grade DCIS never evolved to high grade DCIS or invasive cancer and according to all the experts my risk was very high especially because I was so young (age 44). I am in the process of writing my 10 year update since 2011 and I will go into more detail. If I were in your shoes, I would seek out SONOCINE automated ultrasound for follow up. Dr. Kelly is in LA. He invented SONOCINE and he has helped many women like you decide whether or not to have a biopsy. My sister n law Mariann went to him after being told she needed a biopsy and I recorded a video of her. https://youtu.be/AmIY2BuRcBs
And more info here about it:
Please do not hesitate to email me and I am also happy to talk by phone if you ever need to talk anything through. dp4peace@yahoo.com
Much love and blessings,
Donna
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Hi! I read Donna’s reply and would just like to add with my needle biopsy (about 2015) no one even told me they would put markers in but did so anyway. I had all the same advice that Donna received and refused all. I have also refused all mammograms since that time. With my own research and Donna’s blog info I have done nothing except change my diet and lifestyle. Anyway as I did do your own research and do what is comfortable to you.
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Dear Donna,
Thank you for creating this website and for sharing your personal story.
My name is Federica, I’m 42 years old, and I’m a physician (a gastroenterologist). I’m Italian and Italy is where I live, so forgive my mistakes as English is not my native language.
I would like to share my story with you and with your followers:
I’ve always been diligent with my breast screening, I started with ultrasounds and in 2018 (at the age of 40) I had a little nodule removed from my left breast, which turned out to be a ductal papilloma with some foci of atypical ductal hyperplasia. A few weeks ago, on February 17th I had a routine mammogram that showed three tiny clusters of microcalcifications (4-5 mm each) in my left breast. An ultrasound and US-guided biopsies were made right away (plenty of them as the targets were difficult to reach). The histologic examination of the biopsies showed a range of abnormalities with more foci of atypical ductal hyperplasia, lobular carcinoma in situ and also ductal carcinoma in situ, low grade (G1).
Now, despite the fact that I’m a doctor, when I received the diagnosis I knew very little about the meaning of it, and I have to say that the Breast Radiologist that gave me the diagnosis didn’t explain anything to me about the natural history of DCIS, she just said that surgical intervention was required – mastectomy in my case, since my breast is very small. I was shocked and confused.
While my colleagues very helpfully planned for me an MRI and a consultation with the breast surgeon of my Hospital, I started reading about DCIS and bumped also into your website (a very useful resource, thank you!). I then started understating how DCISs, especially the low grade ones, not always progress towards invasive carcinoma, but at the same time I understood that there is no way to discriminate the ones that will progress from the ones that stay put. Active surveillance is not an easy path to follow. My lifestyle and diet are already fine as I tend to eat only whole foods following a low-carb-healthy-fat style, I’m lean and physically active, etc etc. What made me decide to go forward with my surgery is that in a proportion of cases, the bioptic diagnosis can change after thorough examination of the post-operative specimens, and sometimes the diagnosis can be upgraded to invasive carcinoma.
On the 15th of March I had a bilateral mastectomy (skin/nipple sparing), with bilateral sentinel node excision, from which I’m now recovering (it’s tougher that I thought). The intra-operative biopsies of the lymph nodes and of the retroareolar breast tissue were negative.
I’m now waiting for the results of my final histologic diagnosis made on my whole breast tissue.
I will keep you posted!
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Hi Federica, We have a lot in common – I’m also a doctor and also had a double mastectomy (last April) after (initial) diagnosis of DCIS. It did turn out that I had invasive stage 1 CA and I waited a long time to make my decision (knowing it was a slightly higher risk to wait a while to make the choice, but signs and tests always pointed to a slow growing cancer, both for the DCIS portion and the DCIS portion). I also had very small breasts and it was a part of the decision, though my biggest reason was my feelings about and experience with anti estrogen drugs. It is different for everyone. I wanted to offer my support in your recovery. Congratulations, the decision is so hard and the emotions can be intense. I am doing really really well now almost a year after my surgery. Let me know if you have any questions at all. Lydia
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Lydia, thanks for your words. I’m happy to know that you are feeling well after your surgery. I hope I will do too, with time. Now it has been less than a month for me, I reckon that things get better day after day, but I still have discomfort (I have tissue expanders). The emotional healing is also challenging, but like any other healing experience it takes time.
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Thank you so, so much Donna for sharing your journey with DCIS!! I’ve been on a similar path with DCIS and MANY biopsies (especially hate the wire localization – brutal!!) and this has empowered me to consider options besides just mastectomy, radiation, and tamoxifen! You won’t hear the medical community (i.e., doctors) providing this type of information and I believe at looking at all options before making such drastic far reaching health decisions.
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I have diagnosed high grade DCIS with 11 mm lesion . Please advice for treatment. Thanks
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Hi Shibani,
I would suggest getting a 2nd pathology opinion and ask your Dr. to order DCISionRT test. Some resources here: https://dcis411.com/faq/
High grade DCIS is very different than low-intermediate grade. You want to make sure the diagnosis is correct. I do not give advice for treatment….just offer my resources and insights for slowing down and incorporating holistic health practices if this is something you believe can help: https://dcis411.com/holistic-health/
Blessings,
Donna
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This is Federica again. It’s the 6th of April and a few days ago I received my conclusive diagnosis on the whole tissue of both my breasts, after my bilateral mastectomy. About my DCIS: it was a sigle lesion of just 4 mm; it was low grade (G1) and non-comedo type (micropapillary), so all parameters indicate an indolent lesion that probably wouldn’t have progressed. A part from that I had multiple foci of lobular carcinoma in situ ad some other less relevant abnormalities. All the lesions were in the left breast. The right breast was ok.
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Hi Frederica – hugs to you as you continue your recovery. Thanks for sharing your story. How do you feel about it now that you know your conclusive diagnosis?
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Hi Kirsten,
I don’t know how I feel.
One of the reasons why I felt convinced about such a drastic approach to my DCIS (having mastectomy) is that I feared I had occult invasive carcinoma (there are other reasons too). Now that I know I don’t have invasive carcinoma, I feel relieved. And I feel grateful.
However, at the same time I can’t help but feel sad and depressed. I tell myself that time will help, and that this is just the physiological reaction to what I had to undergo.
I’m struggling a bit with my recovery from the mastectomy, especially from a psychological standpoint.
I wish I didn’t have to undergo all this, but to be honest I was lucid when I made my choice.
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Thank you for this wonderful master piece just diagnosed. Im 62 yrs old Had biopsy and surgeon visit. Date set for surgery “NOT FEELING IT” why is everything Rushed? Need you please call me are reach out. 916 613~ 9197Rdtcare@gmail.com
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I will call you over weekend. Donna
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