Support. Options. Sanity.

donna-pinto_2016My name is Donna Pinto. I was diagnosed with DCIS on January 19th, 2010. Since day one, I have been researching the topic of DCIS day and night — looking for expert insights, science-based studies, resources and support for a less aggressive approach to DCIS.

I created this website out of my own disbelief and frustration with the medical system and a relentless search for emotional support around holistic alternatives which I did not find. It also evolved out of my deepest gratitude for the angels and information that simply appeared along my journey as I followed my intuition. DCIS 411 has given me a space to pay-it-forward and I am humbled and grateful to continue to do research and provide valuable information to help women world-wide make informed and enlightened decisions. If you’d like to hear how this all started, please scroll down and read my very first blog post from December 2011 called Why DCIS 411?

TIMEFour questions to know if DCIS 411 is for you:

  1. Is your gut telling you the “standard of care” treatment protocol for DCIS is overly aggressive? harmful? frightening? and wrong?
  2. Do you feel like you are going insane dealing with the maze of doctor visits, confusion, overwhelm and scary statistics?
  3. Are you looking for support and alternative options?
  4. Are you interested in learning more about natural ways to reduce risk of DCIS recurrence or progression?

How to use this website:

  • Click on Blog above for my most recent article or blog post.  Scrolling backwards to peruse 6+ years worth of my writings and insights — all of which are a continuation of my two year DCIS roller coaster story found on the page titled “Donna’s Journey.”
  • Please take some time to explore the menu above and read through my blog posts. Think of it as a free book! There is a wealth of information and helpful resources.

Ways you can stay connected and receive updates:

I make no money from DCIS 411

I created this website as a labor of love. My greatest reward has come from comments such as: “I am in total peace as I have found you. I would like to extend my heartfelt thanks to you, Donna and all your supporters on DCIS411.com.” 

New Studies and Media Highlight Overtreatment Problem

In 2015, I was thrilled to be interviewed by TIME Magazine, KPBS/NPR and the San Diego Union Tribune. Please click on the media page (in above menu) to see all the great news stories regarding DCIS overdiagnosis and overtreatment.

Click here to read Women’s Health article featuring my story on September 29, 2016.

‘Why I Refused to Get Treatment When I Was Diagnosed with Breast Cancer’

“Everyone has the association that cancer is a death sentence.”Best DonnaDSC_0163

 

Why I co-created a 2nd DCIS website  

After a year of feeling very alone and unsupported for refusing “standard of care” treatments for DCIS, I was thrilled to find Sandie Walters’ website “DCIS Without Rads.” We became fast friends and decided to join forces to create DCIS Redefined: Dilemmas, Choices & Integrative Solutions.  This website provides valuable resources, studies and personal stories submitted by women with DCIS. Please join our Pro-active Breast Health Club to receive periodic articles via email.

See below — Why DCIS 411? — my very 1st post in December 2011

Why DCIS 411?

support. options. sanity

support. options. sanity

My heart sank, my head spun and my gut knew… The “standard of care” treatment options offered to me following a diagnosis of DCIS didn’t feel right. My intuition led me on a highly motivated journey of investigation.

With all the breast cancer awareness, pink campaigns and races for the cure, why had I never heard of DCIS? And, after being diagnosed, why had no one else that I told ever heard of it!

What I have since learned is that although DCIS (Ductal Carcinoma In Situ) is considered “stage zero” breast cancer, it is still counted in the breast cancer statistics and accounts for 1/4 of all breast cancers diagnosed today. According to the American Cancer Society, about 60,000 cases of DCIS are diagnosed in the United States each year, accounting for about 1 out of every 5 new breast cancer cases.

Because there is so much uncertainty around whether or not DCIS will progress to invasive cancer, treatments are extremely aggressive (as if one has invasive cancer) and there is little support for those who choose a less invasive natural healing/active surveillance approach.

This site is an on-going compilation of research which continues to enlighten my journey. What I have learned brings me peace of mind, a healthy body and a joyful spirit. I hope it can do the same for women world-wide diagnosed with DCIS and their loved ones. I am grateful beyond words to the scientists, doctors and true health advocates who provide new research, resources and insights regarding DCIS.  I feel compelled to share this wealth of information with women everywhere.

Please read the About page, Donna’s Journey and Holistic Healing Plan for more of my personal insights, motivation and story.

Above all, DCIS 411 provides women with the latest information from credible breast cancer experts regarding DCIS  — information that their doctor may not know, may not believe or may not tell them — information that is not readily available on breast cancer websites or on message boards. In order to make a truly informed decision, the information  found on the Resources page is vitally important. Below are excerpts from one of the articles that has made a huge difference in my treatment choices.

Dr. Laura Esserman, MD, MBA, professor of surgery and radiology at UCSF and Director of the Carol Franc Buck Breast Care Center at UCSF states:

  • “Minimal-risk lesions should not be called cancer.”  
  • “With DCIS, the bulk of what we find is not high grade.”
  • “Only high-grade DCIS is likely to progress to invasive breast cancer.”
  • “If it doesn’t look like high-grade DCIS, we should leave it alone. We would eliminate two thirds of all biopsies if we did.”
  •  “Currently there are sufficient data to stop and rethink the entire approach to DCIS.”
  • “Less than 5% of DCIS turns out to be something else, including invasive cancer.”
  • “There are now 60,000 new cases a year of DCIS in the United States. But we haven’t seen any drop in invasive cancers, despite treatment of DCIS as if it were early cancer.”
  • “The burgeoning problem of DCIS is a result of mammography screening.  In the days before widespread mammography, DCIS was rare. In the United States, DCIS incidence has risen from 1.87 per 100,000 in 1973 to 1975 to 32.5 in 2004, according to a recent report published online January 13 in the Journal of the National Cancer Institute.” 
  • “Is the purpose of mammography screening to look for DCIS?  No”
  • “Maybe we shouldn’t try so hard to find it — particularly low- and intermediate-grade DCIS. We need to take them out of the screening agenda.   
***********************************************************************************
  • To receive email alerts whenever a new article is posted: click “Follow” to the right.
  • DCIS 411 on Facebook: Please click “like” to the right.
  • This site is meant to be interactive. Please reply and leave comments!

 I look forward to connecting with you and sharing insights. ~ Donna 

MommyFace2

223 Responses to Support. Options. Sanity.

  1. Kay Ashley says:

    Had my first post diagnosis check up this morning (6 month) and all is clear-I’m officially cancer free and move to “survivor” status. Of course, I had to answer, numerous times, as to why i had refused radiation and tamoxifen. Each time I got that “you did WHAT?” response followed by the comment, “well you know not doing standard of care increases your chance of a recurrence?” Good grief, yes, I know that and I’m willing to bet I know much more about my case and “standard of care” than any of them. So, scare tactics still continuing, even as they’re telling me I’m cancer free and my breast tissue and lymph nodes were “perfect”. I’m sure I’ll have another round of scare tactics in 2 weeks when I followup with the breast surgeon. Of course, my naturopath Dr and clinical nutritionist were happy. I just keep wondering why all I hear about is recurrence and nothing about the 80% that never have another problem. Oh yeah, because then they can’t scare you into doing things that lines their pockets with cash.

    • Pamala says:

      Kay-I was diagnosed (with low grade dcis) last week but going to see an oncologist this week. Did you have a lumpectomy? I want to refuse having tamoxifen and radiation because of past health issues. I do plan to change my diet and take the supplements Gail has recommended. Would love to know your thoughts.

    • Claudette Bendorf says:

      My DCIS was discovered in pathology following breast reduction, no’thing seen in mammogram. Since I already had surgery for reduction I decided to have double mastectomy. No radiation or chemotherapy. I, too, was asked by many why I didn’t do chemo or radiation. My feeling was, and is that I had something removed for a healthy life, why would I put something into my body that may make me ill. Same thinking with radiation. Why would potentially healthy cells and organs be exposed to radiation. For me this seemed like the best decision. I was diagnosed October 31, 2008 (spooky Halloween trick). I am doing well. Have a yearly chest X-ray now.

      • Joan Merwyn says:

        FYI I had a lumpectomy for Stage 0 DCIS and refused chemo and radiation. One year later, it came back, scattered in the same breast, and I had to have a mastectomy. I still did not need chemo and radiation because it had not metastasized to the lymph and I caught it in time.
        I feel that it’s very important to get screenings regularly because if it had spread to the lymph, I would’ve had to have the full treatment.

      • Ellen Berman says:

        Hey Joan. Do you mind if I ask what grade your Stage 0 DCIS was? And did your doctors decide it was that same grade thoughout the breast, hence your mastectomy decision? Hope you are doing well! Sounds like you are. – Best, Ellen

  2. dp4peace says:

    Fantastic Kay! I feel like we are “survivors” of the system!! I’m curious, what size and grade was your DCIS? And did you have clear margins? I am going on Monday for a RODEO MRI…it got approved by my insurance!

    • Karen says:

      Saw you had the Rodeo MRI….did you feel it gave you a true picture of the extent of the DCIS? I heard it’s a great test showing if DCIS has progressed or not. Hope to hear about your experience

  3. Michele says:

    first ive heard of this term. im 45 and have annual mams. fibroids show each time and my ob suggested ultra sound first time and 5 years later. i get results that state “no sign of cancer”. is this enough for piece of mind. just wondering. Michele w from Michigan

  4. marua says:

    Can I consider mild naturesl. Hormone therapy??? And supplement by my alternative natural care dr

  5. Gail says:

    Hi, Donna! I want to leave this for All and Sundry who might drop by. I just had a second excision to get that good margin of 10 mm (or 1 cm), and that’s all I want to do. Supporting this is a major long-term study led by Dr. Silverstein out in California: here’s the abstract, with the URL if you want to read more.
    “DCIS Treatment Choice: the Van Nuys Prognostic Index (VNPI)”

    Silverstein followup, published in 2010.

    Figure 1, A shows 320 patients with scores of 4, 5, or 6 analyzed by treatment (excision alone vs excision plus radiation therapy). The local recurrence rate at 12 years for those who received radiation therapy was 2.5%. For those treated with excision alone, it was 5.4% (P = NS).

    When analyzed by individual score, those who scored 4, 5, or 6, Regardless of treatment (excision alone or excision plus radiation therapy), had a local recurrence rate of 6% or less at 12 years.

    With almost three times as many patients as originally published, the USC/VNPI can be more finely tuned to aid in the treatment decision-making process. To achieve a local recurrence rate of less than 20% at 12 years, these data support Excision Alone for ALL patients scoring 4, 5, or 6, AND patients who score 7 but have margin widths greater than3 mm.

    Excision plus radiation therapy achieves the less than 20% local recurrence requirement at 12 years for patients who score 7 and have margins less than 3 mm, patients who score 8 and have margins ≥3 mm, and for patients who score 9 and have margins ≥5 mm.

    http://intl-jncimonographs.oxfordjournals.org/content/2010/41/193.full
    Best wishes,
    Gail

  6. paulagloria says:

    could someone explain “margins” to me?

  7. Gaylyn Bicking says:

    Could someone explain how to calculate the size of the excision in regards to the VanNuy Index? My excision was 3.5 cm x 2.6 x 2.1.

  8. Donna says:

    Hi Gaylyn,

    It’s not the size of the excision. The VNPI looks at the total calculated size of the DCIS. It should be just 1 number — either in milometers or centimeters.

  9. Katy gorman says:

    I have found your blog very interesting. Was diagnosed in dec following routine mammo, biopsy showed atypical ductal hyperplasia. This led to lumpectomy, found dcis. Needed a total of three surgeries to clear margins, including segmental mastectomy, removed tissue down to chest wall, still needed third surgery. Now going fwd with radiation, 33 days, external beam, then tamoxifen 5 yrs. the whole process has been bewildering, so decided to share on my own blog, Breastcancerrookie.blogspot.com. Your experience provides very good food for thought. Thank you. Katy

    • dp4peace says:

      Hi Katy,
      Thanks for sharing your story and blog. I was headed down a similar path…and we have similar experiences, yet I do not know the particulars of your DCIS — would you be willing to share the pathological diagnosis? Grade, size, etc. Did you get 2nd opinions? LOVE your blog! Especially “chicken knockers!” Gave me a good laugh…and that…is the best medicine! Be well and keep on writing…there’s good healing in that too!🙂 Donna

  10. Tafida Karkar says:

    Hi Donna,
    Thanks for being an inspiration. I was diagnosed with DCIS October 2012 . It was stage 0, grade 3. After 2 stereostatic biopies at one facility, the doctors there said I need lumpectomy, radiation and tamoxifen. I decided to go for a second opinion to UCSF, and there the surgeon suggested to take the oncocyte DX test which I did. The results came back with 15% chance of recurrence in ten years of DCIS or invasive breast cancer. Had lumpectomy January 2013. The pathology report came back with clear margins and my DCIS is ER estrogen positive. No radiation , but should be on Exemestane (Aromasin) for 5 years.

    Refuse to take the drug. I already changed my diet and went all organic. But I feel I need to do more. I need to be under supervision. I need somebody to tell me exactly what to do. Any referrals to Naturopathic Doctor and clinical nutritionist in San Francisco or any suggestions?

    Thanks a lot
    Tafida

    I

  11. Tafida says:

    meant oncotype DX……….

    • Misty Bosma says:

      Hi Tafida,
      It’s been a while since your last post. I hope this message finds you in good health doing well. I was just given the same diagnosis DCIS, grade 3. I’ve recently had a lumpectomy. Clear margins and only small residual DCIS found, but pathology says still Grade 3. My tissue was just sent out for oncotype DX test to see if perhaps we could skip radiation. No results yet. I share your concerns about Radiation and Tamoxifen. Could you let me know what course you eventually took and how you are doing?
      Sincerely,
      Misty

      • Hi Misty,
        Neither DCIS nor invasive breast cancer requires radiation, tamoxifen or mastectomy. You should not use these therapies. They all are mistakes in medication. DCIS is an early sign of defective estrogen surveillance of cell proliferation caused by either low estrogen level (estrogen deficiency) or failure of estrogen receptors (estrogen resistance). Radiation, tamoxifen or mastectomy reduces the systemic capacity of patients for fighting against cancer, while locally they may destroy the defensive cellular zone in the surroundings of the tumor.
        Natural therapy and prevention for improvement of hormonal and metabolic balance: premarin, vitamin D, iodine, selenium, weight loss (if you are overweight), Mediterranean diet and the most important; regular physical activity.
        By this method you will be healthy, and destroy the remnants of tumor cells.
        Please, answer if you have further questions!
        Dr. Zsuzsanna Suba

      • Wendy says:

        Dr. Zsuzsanna Suba,

        Thank you for sharing your expertise on treating DCIS naturally! It’s a shame mainstream medicine has us headed in the wrong direction.

        Wendy

      • Hi Wendy,
        Greetings. Please, kindly help in sharing the possibilities of natural therapy among women in desperate situation. Cancer is curable! I publish scientific arguments.
        Dr. Zsuzsanna Suba

      • Ellen Berman says:

        Hey Misty. Welcome to the DCIS journey! I technically didn’t have enough “bad” cells to get the oncotype test (good thing) but my surgeon who did the lumpectomy (in lieu of the mastectomy that 4 other doctors had recommended previously) and the nipple-ectomy due to Paget’s disease of nipple, said my Paget’s was “slightly” estrogen positive and suggested tamoxifen but she knew I was gonna say no. She also reminded me that it is recommended to prevent recurrence, NOT to treat current disease. Since I have low risk factors due to being white, age 60 and no history of breast cancer in family, I declined. I also declined radiation — which was recommended not only to prevent recurrence, but to stem the spread of any remaining DCIS. So, it’s still kinda scary, not knowing for sure if the DCIS is spreading throughout other ducts or if there is an invasive cancer lurking. I am taking turmeric and wormwood, which I have read can be a good DCIS defense. There are other natural and herbal things but these seemed to have the most research. Please let me know how it’s going and the results of the oncotype test — it may help you predict your risk level more closely than the doctors can tell based on your current pathology and imaging.

      • Misty Bosma says:

        Ellen and Zsuzsanna, thanks for responding. My high grade DCIS w/ comedo necrosis diagnosis was confirmed by Dr. Lagios second opinion. Oncotype score was high, 61, but Dr Lagios disagreed with their projected rates of recurrence for my case. My DCIS was small, under 1cm and my margins were clear and over 1cm so Dr Lagios gave me a Van Nuys score of 7. He gave me a recurrence rate of 14% (for DCIS or IBC) if I do nothing further. Oncotype rated me at 24%…. I have refused tamoxifen and radiation. I told my doctor that if my DCIS was serious enough for these treatments, then a mastectomy seemed the “lesser evil” (for me). So I gave her the choice of lumpectomy and careful monitoring vs double mastectomy and asked for her recommendation. She took it to her tumor board and everyone said that they would lean toward lumpectomy only vs mastectomy in my situation…. That gave me peace of mind… so now I need to find the healthiest way to do careful monitoring. Any insights/suggestions are appreciated. My doctor says to wait until 6 months post surgery and get a baseline mammo. Then she suggests that I alternate mammograms and MRIs every 6 months. I’m trying to learn about alternatives to mammograms because of the radiation, but a mammogram was what detected my DCIS, so I’m torn. I’m also trying to eat a more healthy diet. I’ve been a pesci vegetarian for 20 years (I do eat dairy and fish. just no meat) and I’m not overweight – especially since all the panic w this diagosis. I was so freaked out that I lost weight because I couldn’t eat. I’m back to a healthy weight now and I enjoy food and life again. I’ve always exercised a few times a week so I think I’m doing fine in that respect. I’m trying to eat more organic foods and reduce cafeine and sugar (which is difficult because I like coffee and sweets). I stopped drinking alcohol completely, though at some point, I would like to be able to go back to having an occasional glass of red wine. I recently increased my dose of vitamin D. My vitamin D blood level was at 38 prior to this and I’ll have it checked again in2 months. I’ve heard that it’s better to have levels of over 40. I’ve started trying to increase my intake of iodine by switching to iodonized salt and eating salmon sushi more often. Any dietary suggestions are also welcome. Thanks and good luck to all! I’m so happy to know that there are others out there who think the same way that I do.

      • Ellen Berman says:

        Misty, to me, your doctor’s suggestion of alternating mammograms with MRI doesn’t seem unreasonable; I, too, had my DCIS discovered by the mammogram and in fact the MRI showed less DCIS than the mammogram, which I am grateful for. I’ve heard that too many mammograms can add up to dangerous radiation and actually contribute to breast cancer, but in my case, I had not had a mammogram in 7 years, and never them yearly before that, when my DCIS and Paget’s Disease turned up. And you are another example of why Dr. Lagios totally rocks in terms of second opinions. He looked at my slides with the cells on them and adjudicated that my doomsday docs had extrapolated too much DCIS and that some of what appeared to be calcifications were actually the result of my initial steriotactic biopsy!!! I am past due for my mammogram follow-up to Paget’s Disease surgical removal of nipple and surgical lumpectomy and it’s supposed to be what they call a “diagnostic” mammogram, but I’ve been putting if off, in fear that the DCIS Grade 3 I had will still be lurking about or spreading. But thanks to this website I am so encouraged,.. indeed, empowered… to take control of my health and make decisions based on my own research and support from other women like you and Donna and everyone here. As for naturopathic approaches, I’m taking wormwood and turmeric and I’ve also read that a certain type of hemp oil (yes from the marijuana plant) has anti-cancer properties, but no confirmed, reliable studies as yet. Does anyone know of any late-breaking proven naturopathic treatments?

  12. dp4peace says:

    Hi Tafida,
    Thank you for sharing your story!

    I do not have a specific referral for a Naturopathic DR in SF, but I would check these links:

    http://www.naturopathic.org/AF_MemberDirectory.asp?version=2

    http://www.lef.org/Health-Wellness/InnovativeDoctors/

    http://www.suzannesomers.com/knockout/knockout_doctorresources20091120.pdf

    You may be able to work with a naturopathic or integrative Dr. over the phone. Dr. Reese in San Diego works with patients over the phone, but it might be a good idea to have an initial visit in person (a good reason to come to san Diego!). Here is her link:
    http://lotusrainclinic.com/
    Please let me know if you do come to San Diego to see her… I’d love to connect in person!!

    Please keep me posted and keep on the healthy path!
    Donna

  13. Michelle Radin says:

    Hi, My name is Michelle and I felt empowered by your blog. Was diagnosed with DCIS December 22. Had a partial mastectomy January 8th. I was a candidate for MammoSite Therapy. I had radiation twice a day for 5 days. I go to PT twice a week and am on Arimidex 1 tablet daily for 5 years. I had clear margins. The Arimidex causes joint pain especially in my hands. I feel if I take it, I am not myself but if I don’t take it I would beat myself up if I had a recurrence. My mom died of breast cancer many years ago which adds to the drama. Feeling confused. My surgeon is very pro save the breast. Some days I just want to remove them. I know you can’t give me any answers. It is my journey but it feels good to talk to someone that has been in my shoes.

    • Debby Pothier says:

      Michelle, I was wondering how you are doing? I was reading what you wrote her & was wondering how you are doing now. I was diagnosed on May 30. 2013. I am sorry about your mom dying. Your mom may have had different cancer then you. Do you know what kind of cancer she had? There are different 150 different kinds of cancer. One of my breast has LCIS & other has DCIS. I know what you mean about removing them. I think about it some times too.

  14. talatmahmud says:

    This is well written with some important information. I have noted some essential subjects on this writing which I don’t find yet. So, this will be so helpful for my next post. I think breast cancer may be cured fully if it is diagnosed in the early time, I mean starting time of breast cancer. Breast cancer has some steps with some categories. There are many treatment ways to prevent it. There is a treatment way at the period of DCIS. I have been really benefited reading this one. Thank you once again for writing this informative writing.

  15. Debby Pothier says:

    I have been through mammograms for over 9 years & for 4 of those years I had go twice a month. then after going once this year I came back for another a couple days later. Then the wonderful biopsy. my doctor told me I have breast cancer in both breast.
    But I took home my report & looked up every word in a cancer dictionary. The result, I believed I did not have cancer in my left breast This was LCIS. When I went to the surgery oncologist he told me I did not have cancer in my left breast.
    I forgot to tell you I went through the biopsy because they found microscopic specks of calcium . and they wanted to know what caused it, nothing or pre-cancer or cancer. I was also led to believe more then likely would not be cancer, by the doctor.
    Now my right breast it is the DCIS one. I kept telling people I think they caught it to soon. Everyone looked like they thought I was crazy.
    I do not understand how a doctor who got the same information I did came up with both breast being cancer, when I not a doctor came up with no cancer.
    The surgery oncologist walk up to my pictures of my right breast & said exact words. : “Yah,, you got a little something there,”
    His answer was taking the little something out, I do not have a lump at all & radiation. Cut & burn.. The one without cancer, I would take tamoxifen (drugs) with side affects he has never seen.
    My sister in law said her sister used it until she got more cancer & got off of it.
    A lot of this stuff can cause cancer: mammograms, .chemo, radiation to many biopsies, etc. Thanks for the information & allowing me to share. This just happen staring in May.

    • dp4peace says:

      Hi Debby,
      Thank you for sharing your story. It empowers other women to then share theirs. When enough of us share this INSANITY, it will stop!!!
      Much love and light, Donna

    • Linda says:

      LCIS as you know, is lobular carcinoma in situ. More doctors now refer to it as a pre cancer but indicative of higher risk. DCIS may never go further but, depending on grade and other factors it may. When you use the term cut and burn, imo you are being a bit dramatic.

      I personally have lcis and dcis too. One in each breast. I had biopsies on both. What you call cutting, and a wide excision in the dcis. In my life have had 8 surgical biopsies and many needle biopsies. I am and you are, relatively high risk for invasive cancer. I finally found one of the best doctors and breast clinics in the world ( Paul Tartter and Melissa Estabrook in nyc) and am seen 3 times a year. I opted for no radiation or tamoxifen but I also take this seriously and trust my doctor.

  16. kelly says:

    my name is kelly and im 42 and was diagnosed with dcis. im going to have double mascetomy because my family history is very high with breast cancer. just need someone to talk to

    • susan says:

      hi have thing. am having a double mastectomy in 2 weeks with immediate reconstruction and nipple sparing. in my family bad also. so that why i doing double.. saw where yours has been awhile back..How did it all go.

      • Jet says:

        I sent this to Kelly, but wanted to make sure you got it as we’ll. how did things go for you? I’m wishing you we’ll! I’m 48 and diagnosed with low grade. I also have high family history of breast, ovarian and other cancers on both sides of family. Also BRCA positive in family. I’m waiting for my BRCA results, but feel I want double mastectomy anyway. I know it’s extreme but I DO NOT want to be on medication or radiation and to have to continue close surveillance which us harmful. I know people who left it alone, or tried natural options, but it later came back. I have also experienced losing family to breast cancer ( they opted for lumpectomy). I need someone to talk to also. Hoping to hear about how things went for you. Thanks

    • Jet says:

      Hi Kelly,
      How did it go? I’m 48 and diagnosed with low grade. I also have high family history of breast, ovarian and other cancers on both sides of family. Also BRCA positive in family. I’m waiting for my BRCA results, but feel I want double mastectomy anyway. I know it’s extreme but I DO NOT want to be on medication or radiation and to have to continue close surveillance which us harmful. I know people who left it alone, or tried natural options, but it later came back. I have also experienced losing family to breast cancer ( they opted for lumpectomy). I need someone to talk to also. Hoping to hear about how things went for you. Thanks

      • Monica says:

        Hi Jet…anyway I can email you privately? DCIS grade 3, BRAC + . scheduled for surgery next week, just have a few questions.

  17. Michelle says:

    Help ! Dcis 3, check my good breast ,and found more classificans, Going crazy

    • Debby Pothier says:

      Hi! Michelle, How are you doing? Do you have DCIS in both breasts? When did you find out? What do they want you to do? What are you doing?

      I know how you feel, I have good days & bad days. I am trying to go against what the oncologist wants me to do. I enjoy reading Kris Car’s books. She has a lot of information on cancer & her books are not boring. She doesn’t have breast cancer, but lives with 24 tumors. Look online for Chris Wark, who refused chemo, for colon cancer, He has a lot of information on cancer & what he did,

  18. Michelle says:

    yes I do have Dcis 3 in right breast. ,now possible in left. Please tell me your storyb

  19. dp4peace says:

    Great advice Debby about Kris Carr and Chris Wark. Love those two! Michelle, I hope you find some solace, support and good resources here on this site. Know that you are not alone in the confusion and challenges you are facing. Keep investigating and keep listening to your gut. Sending you much love and light, Donna

  20. Janet says:

    Hello,
    I was first diagnosed with a low to intermediate grade of DCIS back in 1999. At that time the treatment turned out to be wide excision with a re-excision which showed a small amount of residual dcis with a one millimeter margin and six weeks of radiation. I healed and moved on from the experience for 13 years with yearly follow ups. Then in June 2012 another area of DCIS was found in the same breast in a completely different area. This was so impossible to believe that it could happen again. I then had another wide excision with the same low to intermediate grade of DCIS, however it was a bit more spread out and one margin was less than a millimeter and another less than two. The standard treatment now was mastectomy. After months of research and other doctors opinions I had the mastectomy and immediate reconstruction in March 2013. The irony is that when my report came back no residual DCIS was found only atypical hyperplasia, I am doing extremely well in spite of the whole ordeal. So much is said about reconstruction after radiation treatment, but I am doing just great. I should have the final implant done in a couple of months then the nipple will be reconstructed. I heard so much from so many people on what to do I am glad that I did the immediate reconstruction it was the right choice for me. I also made a decision to hold off on getting another mammogram on my right side until everything is done and I can cope with any bad news should that occur. I’m reaching out to see if anyone feels reluctant to have a mammogram after this experience and if there are any other screening alternatives that may be more beneficial as I do believe and will always believe that DCIS is overdiagnosed and overtreated strictly because the mammograms are getting more and more precise.
    Janet

  21. Michelle says:

    I am having a mastectomy on Oct 15th soo upset. The left breast ok!

    • Janet says:

      Hello Michelle,
      I certainly know what you are going through, but I can tell you to stay strong be good to yourself try and do things right now that make you happy. Stay as healthy as you can, excercise, eat well, and get plenty of sleep if you can. The latter part was challenging. Take it day at a time try not to think too far into the future just get through the surgery, then the recovery and from there you will improve day at a time. I know it is so upsetting and such a shock, I was soo scared too, just the thought of what I would see when I woke up but surprising it was not as bad as I imagined. In my case my left breast was smaller and had 3 scars so it was not perfect going into this surgery. So now I have one football type scar but the line is so thin it will not be anything once all healed. I had the lattismus dorso flap surgery which is not all that popular as there are other reconstruction surgeries that have an easier recovery, however in my case having scars in different areas this option was the best for me and it turns out it was the right choice as it looks so much like my right side. They put a tissue expander for an implant down the road. Fortunately for me I only needed a couple of visits for expansion which is now done. So I basically wore a bra right away and looked normal once the swellng came down. Can you tell me what type of reconstruction you are having? I am thinking of you.
      Janet

      • Michelle says:

        You are so very kind, your words made me smile. I am having a tummy tuck with the fat to make the breast , before I wake

  22. Janet says:

    Hello Michelle,

    Just checking to see if you had your surgery and all went well.

    • Michelle says:

      yes I did. I had a tram flap , my body rejected , so I was taken back to surgery. This was on Oct 15th. I have had lots of problems such as stomach has big hole slow getting well, leakage from a expander. Waiting on an implant. Next surgery is Dec.12th hope all goes well.

      • Janet says:

        Oh no I’m so sorry you had these complications. Please take care and rest as much as you can. Will check on you in a couple of weeks to see how you are doing. You will be in my thoughts.

  23. Janet says:

    Michelle,
    Just checking to see how your surgery went hope you are doing well. Thinking of you

    • Michelle says:

      I am doing great ! I am back at work again , feeling almost like myself again finally, thanks for all your words of encouragement

  24. Judy Schwartz says:

    Hi,
    My name is Judy, i was diagnosed with DCIS in January. Mine is intermediate to high. I have a line of micro calcifications from the front of my breast to the back. The back came back as un conclusive. I am scheduled for oncoplasty with Dr Silverstein on March 13. They gave me a hematoma when doing the biopsy so we are waiting for it to heal.
    I dont want to do radiation or any drugs and they want me to see two oncologists. I am a holistic girl doing Paleo and dont want to put poison in my body. Feeling bad about that part.

    • dp4peace says:

      Hi Judy,

      Have you consulted with Dr. Lagios for a 2nd opinion? Maybe you are a good candidate to forego radiation and drugs. Also, I would suggest reading the book, “You Did What? Saying NO to Conventional Cancer Treatment” by Patrick and Hollie Quinn: http://www.youdidwhatbook.com/

      Great that you found Dr. Silverstein….Keep in touch and keep following that holistic girl gut!🙂 Donna

      • Judy Schwartz says:

        Tomorrow is my surgery. Praying that I have cler margins! I bought the book and will get a 2nd opinion once the pathology cones back.
        Best,
        Judy

      • dp4peace says:

        Prayers for clear margins and much peace, light and love to you Judy.

      • Judy schwartz says:

        Hi Donna,
        I am so grateful to say my margins came back clean!!!! Thank God!! They want me to do radiation, and as I have said before I am an organic girl, I don’t want to do it unless it is absolutely necessary. I am getting 2nd and third opinions and doing my own research before I decide what to do.
        I am using Dr. Lagios and Dr Tripathy.
        I will let you know what path I follow.
        Very Best,
        Judy

      • dp4peace says:

        Wonderful news Judy!! Thanks so much for sharing!! Keep us posted!🙂 Donna

      • Jet says:

        I’m an organic girl too, but double mastectomy seems less cruel than tamoxifen and radiation. Is that crazy…? I’m afraid to just opt out of meds and radiation. I have lost people in my life and have a lot of family history of breast, ovarian, and other cancers. I want to feel worry free and clear of it – and of course to continue positive life changes. Help! Thanks

  25. Andi Strom says:

    New to your blog, I have found it informative & inspiring…
    Today, 3/6/14, is my 1 year since diagnosed with ‘high-grade’ State 0 DCIS…My history: left breast mastectomy, 2nd surgery to get clear margins, with 6 weeks radiation. I am now in the process or reconstruction – which has been a nightmare. (really thin skin that keeps ‘opening up’) I wish I hadn’t chose to have immediate reconstruction… And, I wish the medical community would ‘think outside the box’ in the treatment for DCIS…I am also on the fence with taking Tamoxifen…I take the drug sporadically – which I know isn’t what I’m supposed to do…I hate taking drugs, especially when they can cause other issues!!!
    Anyway, glad to hear your doing better since your surgery…And, thank you for sharing your personal story…
    Andi

    • dp4peace says:

      Thank YOU for sharing your story Andi! So sorry to hear about your difficulties, but really appreciating you sharing about it all. It does help others to know the real truth that doctors sometimes underplay and I think by writing about it, it helps you too. May you continue to heal on all levels. Love and blessings, Donna

      • Desiree Basila says:

        Hello Donna,
        It is amazing how much this site has grown! I spoke with you shortly after your visit to UCSF as a patient peer support person through the Decision Services Program there. I too had DCIS and chose to do active surveillance.

        My surgeon, Dr Shelley Hwang is trying to touch base with women who have DCIS and have chosen less agressive treatment strategies. I will be passing along your site. Glad to hear you are doing well! I also am still stable. Also without hormones.

        I am now getting a master’s in genetic counseling at UCI. Would love to get together sometime now that I am in the area, but that aside do keep your eyes open for any comments from Dr Hwang.

        Take care,
        Desiree Basila

      • dp4peace says:

        Hi Desiree,
        I did not see your message until just now…have been away on a bike across California trip so just getting back in the technology loop. So great to hear from you! Congrats on your MA pursuit! I recently got my Certification in Nutrition and I am now working to educate youth on healthy eating for disease prevention and well-being! Thanks for passing my info along to Dr. Hwang. I am very familiar with her work and would love to help in any way. Glad you are doing well.🙂 Donna

  26. Paula says:

    Hi Donna,

    I am now 6 months on from surgery for DCIS, and I am now finding myself feeling that there is virtually nothing I can eat which has not in some way been linked ( on the internet) with cancer, or contains something that has .

    I have lost a lot of weight as a consequence, and eating has become just a necessity and is no longer a pleasure.

    I need to find a cookbook and definitive guidelines which provides recipes for ‘safe’ , nutritious and appetizing food.

    Can you please help me?

    Best regards,

    Paula

  27. dp4peace says:

    Hi Paula, Sorry to hear you are not enjoying food anymore. I have not really used a recipe book as I eat mostly raw or roasted veggies with lots of spices and herbs. I use coconut oil for cooking and lots of garlic, onion and ginger. I LOVE eating and I eat a lot! I also eat a lot of good fats such as avocado, raw, organic nuts and seeds. Almond butter and coconut oil on some whole grain or Ezekiel toast is delicious, filling and will keep you from losing weight. Also protein smoothies are great. I have posted a lot of my daily recipes/food here: https://dcis411.com/2013/04/16/donnas-daily-rx/

    Check out Chris Wark’s site and all that he eats: http://www.chrisbeatcancer.com/what-i-eat-now-post-cancer/
    Another favorite of mine is Kris Carr: http://www.amazon.com/Crazy-Sexy-Kitchen-Plant-Empowered-Mouthwatering/dp/1401941044

    Food from the earth is such a blessing and comes in such a variety of tastes, smells and colors….I hope you soon find a renewed joy and pleasure of eating nature’s bounty! Please keep me posted!🙂 Donna

  28. Paula says:

    Hi Donna,

    Thanks for you response and your advice. I will certainly try some of your suggestions!

    I guess it is just an adjustment and the sense of loss felt from having to avoid some favourites will pass as new favourites are found….

    I was a little confused by your suggestion of whole grain bread however as I understood that yeast, gluten and wheat were to be avoided? Are you saying that things on your list to avoid are ok some times or in moderation?

    May I ask if you eat eggs and potatoes? My naturopath seems to think they are fine, but what I read suggests they are acid forming and should be avoided?

    Since my diagnosis, it feels like I am surrounded by potential threats, including food, which were once life enhancing but are now to be feared. For example, last week I was in a health food restaurant with some friends. I couldn’t find anything on the menú that didn’t contain at least one ‘banned’ food. We were sitting outside and someone on another table lit a cigarette! I made my excuses and left, feeling totally miserable and a social outcast , like I could never again share the simple pleasure of eating out with friends and being ‘ normal’! The whole food thing is really making it hard for me to move on after my diagnosis, and I find myself doing more and more internet research in the hope of finding some definitive advice. But instead, I find conflicting views and hence just feel more confused, deflated and fearful of food.

    I would appreciate the benefit of your experience and advice to get past this if you feel ale to offer it?

    Many thanks,

    Paula

    • dp4peace says:

      Hi Paula,
      I think it is difficult in the beginning…transitioning to a totally pure and organic way of eating and living. I remember my first month — having a committee meeting for a nonprofit organization I was on the board of — we were at one of my favorite Thai restaurants and I actually brought my own salad in a small cooler! I was doing my intense raw detox and while it was awkward, I didn’t really care. I was so determined and dedicated and simply stated that I was on a very strict diet.

      It has been over 4 years since that intense beginning, but i still rarely eat out and often times I will eat before going out to a restaurant or party. If going to a potluck, I always bring something I know I can eat. I bring my own food when traveling too! Just becomes a new way of life — if you are serious about it.

      I have eased up only a bit from the first year or two….I did go totally gluten free for a couple of years, but now I have 1-2 pieces of whole grain bread like Ezekiel which is sprouted, organic and minimally processed. I also occasionally eat eggs, but only organic, free range. I eat sweet potatoes once in a while (usually baked or roasted) and small amounts of brown rice, quinoa or millet rice cereal mixed in my raw organic trail mix. Chris Wark has some great posts on what he did to beat stage 3 colon cancer. I have followed him and really respect him and all the research he has done. Spend some time exploring his site. Here’s another good post of his; http://www.chrisbeatcancer.com/the-raw-vegan-diet/

      There is a whole lot of conflicting info on the internet, and I too remember feeling very overwhelmed and confused in the beginning — but my friend Adriana just encouraged me to keep investigating. She assured me I would soon KNOW the truth and not just obey her or some other nutrition expert. It is a learning process and it is pure joy once you come to see through the craziness, marketing and BS.

      Have you tried juicing or smoothies?

      Good luck and hope you find some Veggie happiness soon!🙂 Donna
      .

  29. dp4peace says:

    Just to let everyone know…I removed the comments from Jane (per her suggestion) and some of my replys. Blessings of peace and health to all! Donna

  30. Cheryl says:

    Hello Donna,
    I just found your website today. I was diagnosed in May with DCIS, intermediate grade, left breast. I am 49 years old. I had the lumpectomy end of June and the margins came back clear. The pathologist said there wasn’t any more DCIS, but a small area of ADH. I was told the margins were “wide”, but haven’t gotten the exact size of the margins. I feel like I’ve been pulled back and forth lately because after speaking to the radial oncologist, she thought I didn’t need radiation, and asked if I had wanted my biopsy slides sent out for a 2nd opinion. I agreed. The 2nd pathologist came back with a different opinion than the first one. She said there was more DCIS, not ADH. So, off to a 3rd pathologist. That specialist agreed with more DCIS. So, then the radial oncologist changed her suggestion to having radiation. I am a small built woman, small breasts, and don’t feel comfortable having the radiation. I asked my doctor about just taking tamoxifen but possibly taking it at a 1/2 dose, not the full recommended one. She said no studies were done on “1/2-doses” and if that would be beneficial. I am leaning towards have the mastectomy done to be done with it so I don’t have to have radiation, or take tamoxifen. My BRCA1 test came back negative. I have changed my diet to include foods/supplements that are suppose to be helpful..ie: flax seed, chia seeds, turmeric, and Indole-3-Carbinol (IC3). I’m not as diligent as others I have read on your blog about diet, but feel it’s a start. Am I crazy for opting for the mastectomy?? I feel it will be me piece of mind, and avoid the other treatments.

    • dp4peace says:

      Hi Cheryl,

      I personally chose not to have radiation, not to take tamoxifen and not to have a mastectomy — although all 3 were recommended to me by several Drs/ expert opinions. It is such a personal decision that no one can really give you advice. You must weigh all of the information (based on your own particular situation) and then take some time out (away from all the opinions) and let the answer come. Your gut usually knows best. FEAR is the big problem here because often times women are making their decisions based on fear and not true risk of invasive cancer. Because of all the varying opinions, I would recommend yet another opinion from Dr. Lagios. He speaks with you for 45 minutes following a complete evaluation of your slides. He has spared many women from taking over extreme measures — and I believe it is $ well spent. I do understand the feeling of just wanting a mastectomy to avoid all the other treatments, imaging and lingering worry, BUT I don’t believe this to be true. I believe the cells do not operate normally when there is something in our immune systems that is not functioning optimally. This need needs to be addressed….could be a need to reduce risk factors….and there are plenty! It isn’t just diet. My friend Sandie Walters and I created another website: http://www.dcisredefined.org where we have gathered a great deal of research, resources and support….Please check it out and let me know if you have any questions or would like to talk by phone. Sending you a hug from someone who can truly understand! Donna

  31. Cheryl says:

    Thank you for your reply Donna. I will look on that website. I live in New York so I’m not sure a consult with Dr. Lagios is possible. Thanks for the hug….need it!!

  32. milly says:

    I was recently diagnosed with low grade DCIS. Your website is the only one that mentions active surveillance. Drs already told me standard of care is surgery. Do you know of anyone that has not had surgery who is doing active surveillance? Im in ny

    Thanks for the info on ur site

    • I have atypia, and I am doing active surveillance. I have been doing it for 4 years after a core needle biopsy. I got a 2nd opinion from a doctor who serves the rich and famous in Atlanta. His comment was, “Stop treating DCIS and Atypia like Cancer. Do active surveillance.”

      • Wendy says:

        Hi Mistress Susan TV,

        I was diagnosed with intermmediate grade 1 year ago. I’ve had a surgical biopsy as well as a core needle biopsy. One doctor suggested Oncoplastic reconstruction along with a breast lift and two others suggested skin sparing mastectomies. I would not allow any of the doctors to scare me into surgery, so I am doing active surveillance as well a change in diet and lifestyle. I live in Atlanta as well. Would you be willing to pass on the name of the doctor in Atlanta who is suggesting active surveillance? That’s like seeing a unicorn.

        Wendy

      • Wendy, he was the Emory breast oncologist for Monica Kaufman in 1998. I got a second opinion from him in 2012. I tried Googling him with Monica Kaufman, but I get no hit. I wonder if he is no longer with Emory. I wanted to transfer to him, but he would not accept me since I was already seeing one of his colleagues at Emory. However, he agreed to give me a second opinion. I have found no other doctor at Emory who will do wait-and-see. Every year I go, it is the same thing: you have calcification, so let’s do a surgical biopsy.

      • Wendy says:

        Thanks for the info Mistress Susan. I’m actually seeing a Dr. at Emory as well, she’s the one who offered reconstruction. It’s been a journey, but it nice to hear about other women who aren’t going under the knife.

      • Email me AskMistressSusan@gmail because I have a few questions for you.

  33. Clare says:

    Hi everyone, never put anything on a blog in my life. But had a mastectomy seven weeks ago – high gradeHER2+ DCIS – 80mm and I have small breasts – plus a tiny area of invasive HER2+ cancer 4mm outside the DCIS area . Nodes clear. Turned down chemo and Herceptin for a healthy diet and lifestyle. Now being recommended radiotherapy so back to soul searching. Any suggestions?

    • daisyexpress says:

      Hi Clare. I had high grade HER2+ DCIS and appx seven areas of invasive breast cancer with the largest being just over 2mm. I did chemotherapy and radiation and herceptin. My nodes were clear. I just felt I had to go for it as I have a gorgeous 5 year old daughter with Down’s Syndrome who so needs a mom. If this were not the case I may have just had the mastectomy and be done with it.
      I really believe in a healthy lifestyle and diet although I have not been practicing this so much. It is hard as I am 50 and living at home with my parents now and they are not into the healthy lifestyle….makes me nuts.
      Then of course on the news last night was this thing about cancer is just bad luck. I don’t think so…..I believe you have to be healthy. I am not too sure what my goal is in writing this except to say “hi” and go with your gut. I love the Chrisbeatcancer.com site as this is how I landed on this site.
      Keep up with a healthy life. I feel much more in control when I do and how can it not help. My best, Sheryl Gilding…I am on facebook if you want to keep in touch.

  34. Aideen says:

    Hello Donna,

    Many thanks for providing this forum.

    At least two women mentioned calcium or calcification when writing about what had been seen in their breast tests. Is there a link between calcium or calcification and breast cancer ? If so, what are the dietary implications ? I would be very grateful for references to any reading matter you think might be useful.

    I pray that all who have written here will have healing and good health.

    • Donna, I have had calcification for for 8 years. It is my understand that calcification does NOT increase risk of breast cancer, but it can be a sign of breast cancer. Also, it is my understanding that it is NOT ‘calcium’ in a traditional sense that you find in food or supplements. It is more of a medical term.

      For instance, I have fibroids and some fibroids will calcify (become hard), but it has nothing to do with calcium. Also, if you take calcium, make sure you take it with Vitamin K2. They are a require pair like iron and Vitamin C.

  35. informedconsent2014 says:

    Hi Donna,
    I would like to know if there’s a second opinion mammogram reading service you can recommend? I’ve looked through your blog and didn’t see anything specific on that. I know about the second opinion path with Dr. Lagios, but I also feel that women should always get a second opinion on their mammogram if biopsy is recommended, as it is in my case for a small group of microcalcs. I found that my mammogram report was quite vague, with no indication of size of the calcs. Only the first report in 2011 mentioned that “one” calc looked linear in appearance. Apart from that, no other descriptions which i find unacceptably vague if I’m being asked to do an invasive procedure such as biopsy.

    The only second opinion online service I found was something called xmri.com but I know nothing about them and I’m sure my insurance wouldn’t pay for it, although if it they were a known/respected service, I’d pay for it out of pocket. I feel strongly that every step along the way must be seen by other sets of eyes than one’s own local radiology group or doctor. Thank you again for any second opinion mammogram doctor or service that you feel you can recommend!

  36. Donna Pinto says:

    I have not come across a 2nd opinion service for mammogram evals. I have gone for several 2nd surgeon opinions over the last 5 years and it seems every time I went for a different opinion, they wanted me to re-image using their mammogram machines (which I refused to do.)

    I would call around to another credible hospital in your area and ask to speak to the radiologist. I just did this and had a very lengthy conversation with a radiologist at UCSD. I was asking about their MRI machine and how it differs from the Aurora machine. I don’t think they have many people calling them up and asking such detailed questions. I would also call your ins. company and ask if you get a 2nd opinion on your mammogram reading would they cover it? I have never heard of xmri.com. Please share any info here that you find. Thanks for all your great input!

    • informedconsent2014 says:

      Thanks for your response! I really don’t want to have my films read by another hospital in this area because I feel they’ll just copycat whatever the local radiology group here said. I may look into sending the report/CD of my films to Johns Hopkins…..I’ve seen their online question/answer website which is rather interesting. I may email xmri and ask a few questions and will let you know what I find out. I think it’s important to find a reputable second opinion mammogram reading service that’s similar to Dr. Lagio’s pathology second opinions so that DCIS (or suspected DCIS) patients can start the second opinion process right from the get go, and not later in the process. I feel it starts with the interpretation of the mammogram films which as we know can be interpreted in various ways, with a lot or very little detailed information. I’ll continue to explore and see what I can find!

      • Donna says:

        Great investigative work! You may want to try UCSF or Duke Univ. They are the two that are at the forefront of halting the OVER TREATMENT of DCIS. Dr.Laura Esserman (UCSF) and Dr. Shelly Hwang (Duke).

      • informedconsent2014 says:

        I’m glad I could find this resource, maybe it will help someone.

        I looked at UCSF website and didn’t see any remote second opinion service, so most likely they require a patient to be seen in person. I will look at Duke and see what they offer. If/when I utilize Johns Hopkins service or some other remote second opinion service, I realize that most likely the recommendation will still be to do a biopsy for my grouping of calcs. My main goal is to receive a more DETAILED and specific report than the one I received from my local radiology group. As we know, sometimes a few extra words on a report can be quite valuable in helping patients to decide whether to biopsy or not, or just what is going on in their mammogram.

        I also realize that the second opinion can be a two-edged sword. The more info, (especially if it sounds more worriesome), the more likely the doctor will be to push for biopsy. I wish the opinion could be sent only to me , if it’s a self-referral, not doctor referred. That way I could review it for my own information and decide whether or not I wanted to share it with my doctor. But I do understand that there’s a legal reason on their part to send a copy to the patient’s current doctor. If I find any other remote second opinion services, esp. at well-known medical centers, I will post them. I have found several who will do remote pathology reads, but remote mammography reads are hard to find except for Johns Hopkins and the other one, xmri.com. I will continue to investigate!

  37. informedconsent2014 says:

    Hi again Donna,
    I followed up on the mammogram second opinion services, and I did find one at Johns Hopkins, which will do remote second opinion on a mammogram if BIRAD4 or higher, here’s the link:

    http://www.hopkinsmedicine.org/avon_foundation_breast_center/second_opinion.html
    It can either be doctor referred or patient referred. If insurance doesn’t cover it, the fee is $150. The doctor receives a copy of the report. This may be of help to someone here who is seeking a way to get a second read on their mammogram films/reports without having to re-do a mammogram in their local area or would like a report from outside their own area to hopefully get a more detailed and/or objective reading. I will continue to explore this!

  38. Wendy says:

    Happy New Year everyone! I finally had my second opinion with Dr. Lagios. His recommendation is a total skin sparing mastectomy due to the fact that my DCIS is close to the nipple. He did mention that Dr. Mel Silverstein just released a report on “Extreme Oncoplastic” breast surgery which spares the skin and the nipple. My surgeon in Atlanta is offering Oncoplastic breast reconstruction which would consist of a breast lift and removal of the DCIS on the infected breast and a lift on the other breast for symmetry, but if traces of the DCIS are found after the reconstruction I could still be looking at a mastectomy. I’m so frustrated with this process, but I am trying to keep a level head. I’m still going down the path of holistic medicine in hopes that I can avoid surgery all together, but it’s hard when you have medical doctors on your back to have more surgery. The journey continues…

    Wendy

    • Judy Schwartz says:

      Hi Wendy,
      I had DCIS close to the nipple and Dr. Silverstein did my surgery. It was Oncoplasty just as you were saying that your Dr. is doing there. He was able to get it all and to also have clear borders.
      He also said that if it came back not clear I would have to have a mastectomy as well. I am now doing the holistic path. I did do the raditation because they scared me into it. It was my choice, I am not really blaming anyone for it.
      Hope that helps! Good Luck!!
      Judy

      • Wendy says:

        Hi Judy,
        Thanks for your feedback! I am happy to hear that there are women out there who have had success. This is such a scary process, I can understand why you chose radiation. Did you get a good aesthetic result on the DCIS breast?
        Wendy

      • Judy Schwartz says:

        Yes, He worked with a plastic surgeon and they did a really good job. They took 1 lymph node and thank god that was negative. I do have some scars but they are fading. I am working with a naturopath now in San Diego and I feel great!! It was a blimp in the road and now I am back on my path.

      • Wendy says:

        Hi Judy,
        I hope all is well with you. I was wondering what type of incisions you had for your oncoplastic reduction surgery with Dr. Silverstein and the plastic surgeon. Did you have the traditional breast left incisions (lollipop/anchor)? My plastic surgeon mentioned that they would only make incisions around my areola.

        Blessings,

        Wendy

      • Judy Schwartz says:

        Hi Wendy,
        My DCIS was a large line of Calcifications. Because if the size they need to make an incision verticle above the nipple and also around the nipples and under my breast. It has been 2 years and you can barely see it. It is a very light line.
        Wishing you the best!

      • Wendy says:

        Thanks for the prompt response Judy! Knowledge is power. :o)

    • Ellen Berman says:

      WENDY! Please tell me her your surgeon is/was in Atlanta and your oncoplastic surgeon! I am wanting to get a wide-excision lumpectomy as opposed to a full mastectomy and would like to know if that is possible — and the best oncoplastic surgeon. I have had consults so far with Dr. Theresa Wang and Dr. Behair Ghazi; gonna talk with surgeons Amerson and someone at Dr. Barber’s office in Midtown. THANKS AND GOOD LUCK!!!

      • Wendy says:

        Hi Ellen,
        I am seeing Dr. Toncred Styblo at Emory. I have lots of details for you. My surgery is scheduled for next month. You can reach me at wlstewart00@yahoo.com if you would like more details.

        Blessings,

        Wendy

      • Dr. Zsuzsanna Suba says:

        Thin margin in case of lumpectomy is not only enough rather beneficial! Sparing the adjacent tissue containing accumulated defensive immune cells and adipocytes helps in final tumor-free healing.

  39. Paula says:

    Does anyone know if breast reduction surgery (with pathology report indicating prolific atypical lobular hyperplasia), exposed my lymph/ blood system to these abnormal cells now? I am seeing a cancer center next week, two weeks out from my surgery/ diagnosis. Any input would be greatly appreciated. So encouraging to see so many brave, aware women here. Great journal!

  40. informedconsent2014 says:

    Hi Donna,
    Just checking in with the latest. As I indicated recently, I would be having my 6 month follow-up mammogram for a cluster of microcalcs which had been seen in 2011, Birads4, biopsy recommended. As you know, I refused the biopsy at that time, which my doctor agreed to. I only had one slight increase in the calcs at the Dec. 2014 mammogram. Just got back from my six month follow up on that and there was no perceived increase in the interval, so that’s good news. The radiologist somewhat did a CYA type remark by saying “probably not significantly changed” in the interval. “probably” isn’t exactly a scientific remark, it’s an attempt at CYA, which is why so many women are pushed into biopsies based on rather weak evidence.

    Anyway, I feel going into my follow-up appt. in a few days with my doctor that I am still on firm grounds to decline the biopsy. From 2011 to 2015, there has only been one “slight” increase in the calcs, and “probably” no increase in this latest 6 month interval. Biopsy of course is still being recommended. the Birads score hasn’t been changed (nor will it be, until/unless we get a new standard of care through the efforts of doctors like Laura Esserman and Shelly Hwang), but for now, I intend to continue saying “no” to the biopsy. I realize that I don’t precisely fit into the patient profile of DCIS411, because I haven’t been diagnosed one way or the other with DCIS, because I haven’t had the biopsy. But I think it’s still instructional to share with others my follow-up experiences over the course of now almost 4 years, saying “NO” to biopsy. I will let you know what my doctor says about all this. As previously indicated, I suffer from other health conditions that do not do well when my body is placed under invasive procedures or stresses, and for me, it’s been quite a large factor in saying “no” to biopsy, along with the current evidence of how overtreated DCIS is (if that is what I have….it could be benign). I am hanging tough with this and not going to allow myself to be panicked or stampeded into something that at this point I feel is overly invasive. I haven’t yet gotten a second opinion read on my mammogram from Johns Hopkins as previously discussed, but it’s still an option I suppose, in case my doctor becomes stubborn this time around and won’t work with me on this.

    Thank you again for all you do, you inspire me and I hope my story can let other women know that jumping into a biopsy is not always the right decision, depending on the findings and of course, the new levels of understanding we are all gaining about breast disease, breast cancer, etc.

    • dp4peace says:

      Thank you “informed consent” for sharing your story and perspective. It is VERY IMPORTANT for all women to hear that biopsy is invasive and should be weighed heavily — as just this type of injury to the sensitive breast tissue could cause more harm. Too many women do not question this as I did not initially. I was trusting of doctors back then and thought you could not just say NO. Now I realize you can say NO to all of it, including mammograms which are truly at the heart of the overdiagnosis problem. I would recommend further surveillance through thermogram, ultrasound and dedicated breast MRI. I am writing an article on this at the moment and will share soon. Mammograms increase the odds of inducing breast cancer 1% per year in premenopausal breasts. They miss 25% of aggressive cancers and they find way too many indolent lesions that would never cause harm if left alone, but radiologists often rate these BIRADS 4 & 5 and then this leads to unnecessary biopsies, surgeries, toxic drugs and on-going anxiety and worry. You are one of the few who can deal with it in a healthy,logical manner, but most women in your shoes find it too difficult….and panic. It’s a very challenging situation to be in emotionally. Thank you again for sharing your insights and your courageous ways. You are a true pioneer for many women to safely follow. I too left a cluster of calcs which showed as “indefinite” on mammogram in 2011 — which they wanted to biopsy and I refused. Have had 3 years of clear MRIS and this year I had a clear thermogram and ultrasound. Will do another MRI before the end of year. I feel so blessed that I finally got off the mammogram-biopsy-surgery-radiation-tamoxifen train! Please keep posting and sharing your journey! Lots of love and blessings, Donna

      • Donna, I am going to have to rethink getting an MRI. The research I have done states it gives to many False Positives. However, since you have been satisfied with it, I will have to try it.

      • dp4peace says:

        Hi Susan,
        Thanks for sharing your experiences and insights. Check out the website Sandie Walters and I co-created. We both have done a ton of research on breast MRI and she wrote up a great article on it here: http://dcisredefined.org/choices/imaging-and-monitoring/rodeo-mri/

        Must be dedicated breast MRI…look at the difference in #s for false positive and false negatives!!

        It’s great to hear that some drs and hospitals are now being more cautious and not being as quick to biopsy and cut. As Dr. Esserman has stated, “if it doesn’t look like HIGH GRADE DCIS, we should leave it alone.” The dedicated breast MRI is your best surveillance tool. Mammograms are a NOT!🙂 Donna

      • informedconsent2014 says:

        Donna, you are so sweet and it is YOU who is the courageous one, and also the one who has put the time and effort into making/running this blog, listening to everyone’s medical stories and lending your valuable information and support. I truly don’t consider myself courageous – I am really looking at my overall situation, my general physical health, and all the things i’ve learned about a (potential) DCIS and come up with a conclusion that works for me.

        Having said that, it certainly is an emotionally draining situation to be in, and I know that you truly realize how draining it can be. The seeds of fear and doubt that are planted by the doctors into our minds is never-ending. At my Dec. 2014 appt. where there was a :”slight” increase in the calcs, my doctor heightened the pressure on my emotions by declaring, “a biopsy could save your life!” I felt that was a very melodramatic attitude designed to scare me and not at all credible. He said this in a very aggressive tone that he hadn’t used before, designed to panic me. Then he said, also in an aggressive tone, “what do you intend to do about this????” (hands on hips, tapping his foot). I told him I would do a six month follow-up and see what it shows. He huffed out of the room and didn’t even leave me a referral form as he usually does to get the follow-up and I had to call his office repeatedly to get it mailed to me.

        So, even though this June follow-up showed no new increase, I wonder what his attitude will be when I see him in a few days to discuss the future handling of these calcs. He was becoming “antsy” about the whole thing and I truly conclude this is for HIM, not me. So, yes, it is an emotional issue and I feel my overall health has been damaged by the stress. As much as I push it out of my mind, even with the logic and knowing what I know, I still worry about it nearly every day! And that’s insane! But most of us have been in these shoes, all because we have little to no support within the medical world for SANITY. I want to thank everyone who has posted the names of doctors, especially radiologists they’ve worked with, who are more sane. I fully agree with Dr. Esserman that mammography was not designed to hunt for DCIS and that small clusters of calcs found should be monitored only, and not routinely biopsied as is the practice today.

        And that gets us to surveillance problems. By opting to “watch” these calcs, I’ve doomed myself to these constant mammos which I hate and which absolutely do expose me to radiation I do not want. I do not intend to get a six month mammogram and will return to yearly and even that, I do not like. I cannot do MRI due to allergy to the contrast dye used so unfortunately for me, that’s not an option. It is my understanding that ultrasound can’t determine the status of microcalcs, so I haven’t pursued that or thermography. So, it’s a really tough nut to crack. Those of us who want to monitor are left with darned few good options. I’d do every other year mammogram if my doctor would let me, but I know he won’t. I’m just hoping to side-step any UNnecessary six month follow-ups, and for now, that’s the best I can do. I also have to stay within my HMO or I’ll be paying out of pocket big time for non-approved providers or tests that will bankrupt me, so again, there are difficult choices. Those of us who monitor feel very alone, as if we are making up our treatment plans all by ourselves. That shouldn’t be. We should have a structure to depend on, with medical professionals at our side, but most of the time, that’s not the case.

        True, my doctor initially did (and so far still has )allowed me to take this approach, but I don’t know for how much longer. However, the fact that he allowed it at all I like to think speaks to the information and education I had. It perhaps caught him off guard and he realized he had an INFORMED patient on his hands who wasn’t quite so quickly swayed onto the conveyor belt of microcalc biopsy. I hope it has opened his eyes a little and done a bit to further the new horizons in this area of breast treatment. I have never said to him, or to anyone, that I would never have a biopsy. I have said that I wanted to monitor, and that’s what I’m doing. As far as I’m concerned, only one “slight’ increase in the calcs in a four year period is an indicator of essentially stable calcs. That doesn’t mean they aren’t “DCIS”, but even if they are, that gets us back to the crux of the matter, of overtreating these indolent lesions as something lethal or “killer”. …

        About your calcs from 2011 that you are following with MRI, that’s wonderful! I’m so glad MRI IS a choice and an option for you and that you also refused the tear up your breast tissue with another biopsy and have done well for 3 years with monitoring those calcs. It is indeed people like us who are pioneering these issues. We each have different reasons for not doing a biopsy or exploring other monitoring methods, but we are the ones who will ultimately bring about the much-needed change in panic, scare tactics, and utterly non-scientific, non-logical approaches to the microcalc problem. I certainly understand that there are findings that do require biopsy and surgery, but our medical world here in the U.S. has lost its collective mind over microcalcs, pushing women into damaging biopsies (which I am not convinced may indeed spread abnormal cells that were better left alone!).

        I am training myself everyday to not be paranoid and get my head straight and give myself a good talking to , reminding myself not to act like a silly jerk with sleepless nights. KNOWLEDGE truly is POWER! Amen! Hugs Donna and to everyone and I will let you know how my appt. turns out and whether I still have a doctor afterwards lol….I so so admire all of you!

  41. I don’t have DCIS either, but to me, this site is for anyone who has not reached Stage 1 Cancer. I have Flat Epithelial Atypia. My case is similar to yours. I have had micro-calcifications since 2007. Since 2012, I have been Birads4. In 2012, they recommended a Stereotactic Biopsy, and they said that you ONLY have a 20% chance of it being something Abnormal. Unfortunately, I fell into that 20%. The Radiologist did NOT pressure me. She said, “Take your time deciding because it is NOT an emergency.” I ONLY agreed because I live an Organic Lifestyle just like Sheryl Crow, but her micro-calcifications ended up being Stage 1 Cancer.

    I had it done, and I don’t regret getting it. However, I didn’t do enough research on the after effects. For example, they said you should be back to normal in 5 days. Wrong! It took 5 months for my left breast to heal because a nerve was severed as the needle was going in. I wore a sports bra 24/7 for a month because your breasts have to be stable until they heal. Had the surgery been-problem free, I would have only needed to wear a sports bra for a few days. Also, because a nerve was severed, my left breast vibrated off and on and it was sensitive to pressure from water from showerhead for 5 months.

    After my Flat Epithelial Atypia diagnosis and up until now, my breast oncologist surgeon, radiologists, and pathologist have ALL advised to have a Surgical Biopsy, come in every 6 months for a mammogram, and to get a MRI. I said, “No Way!” I only get YEARLY mammograms, and I dismissed the MRI because research has shown that it has a high rate of False Positives. I got a second opinion from a breast oncologist surgeon at the SAME hospital as my primary breast doctor and he said, “Do NOT treat it like cancer. Wait and see. Do active surveillance.”

    In 2012, I looked into Johns Hopkins for a second opinion, but it is my understand that they follow the same protocol as Sloan-Kettering, who I also looked into, when it comes to suspicious calcification: Do non-surgical biopsy. I could be wrong, but that was my understanding. You might want to try the Cleveland Clinic since they have a Functional Medicine Center, so doctors there may take more of a holistic approach.

    Of course, I cannot tell you what to do, but as someone who lives an organic lifestyle, uses herbs, follows Traditional Chinese Medicine, and exercises, I felt 100% comfortable doing the Stereotactic Biopsy ONLY because my case was similar to Sheryl Crow: age, lifestyle, and calcification. However, I refuse to do a mammogram every 6 months or do a surgical biopsy since my calcifications are basically stable or as the radiologist would say, “probably not significantly changed.”

    • informedconsent2014 says:

      Hi Susan,
      thanks so much for all your great information. I am SO sorry your biopsy turned out to be a painful one with longer recovery. Doctors sure do love to underestimate and downplay the after effects of some of this stuff, don’t they? Nerve damage is one thing I fear because I already have nerve problems and lasting pain from having a needle shot into my breast is something I am very concerned about. It’s not your fault that you didn’t know all these things that can happen, it’s the medical profession for not being more cautious about invasive procedures when it really isn’t warranted. That’s what needs to change in this country.

      It is interesting that you had calcs from 2007 and then in 2012 they apparently decided it was the magic time to upgrade you to BIRAD4. The criteria for doing that is sooooo vague, and sometimes seems to be done on the barest of reasons, such as “clustering” or “grouping”. I can understand your desire to get the biopsy, many factors can play into it. Again ,each of us is different and has a different threshold for making these decisions. I think most of us are working, in various ways, to change the way biopsy recommendations in this country are done in the first place, so that we can reduce the numbers of women subjected to these painful procedures which certainly can turn out as yours did, with lasting, lingering problems.

      And are they going to say, “oh gee, sorry we damaged your nerve?” NO! It seems we’re supposed to accept the down sides to these procedures and go on with life as if nothing happened. When we sign a consent form, they are let off the hook. Yet, when we say “no” to biopsy because of these potential problems, we’re “putting our lives on the line”. I am happy that your radiologist didn’t pressure you into the biopsy, though. At least she understood it wasn’t something you had to decide immediately, and that’s good. That’s progress. But it’s still invasive and can have painful consequences (not to mention expensive in some cases, depending on insurance). I’m always amazed at how they make these procedures sound like nothing more invasive than having a tooth filled. Also, some women have had problems with the titanium clip they leave in the breast to “mark” the biopsy area. Many women don’t even know about the marker, that’s how little they tell women about everything that happens in connection with an invasive procedure like this.

      Thanks for the info about Cleveland Clinic. I agree, Johns Hopkins, etc. would probably recommend biopsy. I was just wondering if they might write a more detailed report than my radiologist(s) have. My reports I’ve gotten since 2011 haven’t even shown any sort of measurement of the calcs. In 2011, I went out of my way to meet with one of the radiologists and she finally picked up a ruler device of some sort and held it up to her screen and said, “well, they are about 9mm”. She confirmed that 9mm is quite small. That’s the first measurement I ever got, and none have ever been stated in writing in the reports. So, I’m curious if a second read might give me more info that I could utilize to make decisions regarding biopsy.

      You did absolutely the right thing to get a second opinion regarding surgical biopsy (which I guess is what they’ve been calling lumpectomy and now is being called surgical biopsy, sometimes I can’t keep up with the changing terms and phrases out here in Breast Land!) That’s great that you found a doctor who said, “don’t treat it like cancer” and that the calcs are stable thus far. That’s excellent and shows you are on track with a sane, logical approach for you. I think what we are all hoping for is that within the next 5-6 years, new criteria will be established so that we can relax a bit and get off this treadmill. If/when something concerning develops, okay, we can move forward on that, but many of us don’t require such extreme measures. So happy there’s more and more of us questioners out here! Best of health to you!

    • informedconsent2014 says:

      Susan,
      I just wanted to add to my previous reply, you stated that Sheryl Crow led a similar lifestyle to yours, eating organic, etc. and her calcs ended up being Stage 1 and this is what influenced you to have the biopsy. . Let’s bear in mind that Paul McCartney’s wife, Linda Eastman also led a 100% organic lifestyle (she didn’t have calcs but an aggressive tumor). But what most people don’t know is that Linda Eastman was of Jewish ancestry. Back in her era, BRCA gene testing was unknown, and I’d be willing to strongly bet that her aggressive cancer was tied to a genetic mutation due to her ancestry. My main point in this: we can never know someone else’s risk factors, genetic profile or anything else about them, especially celebrities who often give little to no information about themselves when reporting their cancers to the world. For instance, I strongly feel that Guiliana Rancic’s extensive DCIS was a result of her infertility/IVF treatments.

      At the end of the day, all we can do is assess our own risk factors. Therefore, someone who is vegan or organic but has some unknown ancestral factor that they don’t reveal or even know about might be the underlying factor in their particular cancer. Maybe Sheryl Crow has risk factors that are not revealed in the media, therefore her calcs were Stage 1. I feel we all have to be careful and not do too much comparing of ourselves to those outside our own personal family history. such as as mother, sister, aunt, etc. for history of breast cancer within our own family. So many women are scared by “celebrity cancer” stories that may have nothing or little to do with their own, actual risk factors.

      • Janet says:

        This is a wonderful analogy to all the hype and fear in the media surrounding breast cancer. Celebrities do not tell us what they are diagnosed with but are all to quick to tell us what we should do. We have to make our own decisions on what we will do. I hope to see more doctors stop promoting fear and to listen to us. Not all of us want to lose a breast to dcis nor should we have to. Glad to see that there are women fighting to keep their breast sadly there is little support for it. I would have opted for a watch and wait strategy had my doctor supported it in the least. Now they have to accept that I won’t have a mammogram on my remaining breast. Just love this site and the fact that common sense prevails here keep fighting my thoughts and prayers are with all of you. Sincerely Janet

      • informedconsent2014 says:

        Hi Janet,
        Yes, it is really hard to get most doctors to do “watchful waiting”, even when they KNOW that a wait of 6 months wouldn’t make any difference in the outcome, if only so that a woman can get a second opinion or study the situation so that she’s fully informed. Fully informed patients are not what most doctors want, unfortunately. We slow down the speeded-up process of being rushed into biopsies and surgeries. The surgeon I was referred to when my calcs were found in 2011 told me in a very phony style, that he wouldn’t even wait three months! LOL! Seriously? My own doctor (after he heard how well educated I am on this subject), immediately backed off and said it was okay to watch the calcs for awhile at least. Four years later, there’s been no significant increase in the calcs, so the surgeon was obviously playing a panic game with me, which luckily I realized. If a woman’s doctor won’t slow down and allow some space for discussion, then she should get another doctor ASAP or at the very least, a second (or third) opinion in such serious matters.

        I’m sorry your doctor wouldn’t let you even consider it, but some doctors are beginning to realize that we are partners in our own care and the scientific facts support the concept that waiting in many cases is safe. As you say, at least now they have to respect your decision, based on all that you now know, not to have mammogram on the other breast. And yes, the celebrity breast cancer patients are so irresponsible. I have no problem with a celeb announcing that they have breast cancer , BUT they should always caution people to not follow their decision but to tailor all treatment to individual findings. That should be a standard disclaimer on those types of reports and just shows how badly informed many of them actually are. Instead, the female celebs (latest being Sandra Lee), issue vague remarks about their cancer with a “once size fits all” scare, and the panicked statement to “go get screened!” Sandra Lee is one of the worst by far, she actually says women as young as 20 or 30 should start screening! Thank you for your support and for everyone here who is fighting to educate and enlighten. I am really happy for you that you’re doing what YOU feel is best for YOU!

      • Janet says:

        I totally agree with you regarding Sandra Lee and her comments regarding mammograms for 20 year olds she needs to retract that statement. We would all be better served if she had explained that she had dcis and that her decision was a personal choice and not everyone’s choice. The media is very disengenous when reporting these celebrity incidents of breast cancer buried in the article is that she had a non life threatening condition which is the most important part. A little background on my story started back in 1999 I was diagnosed with low to intermediate dcis at that time the belief was if it wasn’t treated it would progress to invasive breast cancer. The surgeon I has was so aggressive wanted me to have a mastectomy however other doctors disagreed so I had a lumpectomy followed by radiation this was recommended because one margin was only a millimeter. Fast forward to 2012 I was diagnosed again in the same breast different area low to intermediate dcis at first my surgeon said we could see if all of it can be removed then we could follow up. So I had the surgery which showed a lot of dcis with one margin less then a millimeter so now the recommendation mastectomy. I went to Dana Farber in Boston and was told dcis is technically not cancer but has to be treated because of the unknown element. The way they really got me though is telling me I could have more they don’t see so that scared me into having surgery. I waited 6 months to do it. So after the surgery had immediatel reconstruction the path report came back no residual dcis no malignancy! How horrible for me apparently it was everywhere one minute but actually it was no where! To be fair my surgeon is very nice he has been listening to how I feel about all of this and that the surgery did not fit the diagnosis. Furthermore think about it I’m still alive after 16 years with zero health issues which leads me to believe this is nothing more than a condition and some of us may just be prone to it for whatever reason. So after all of this I have decided to jut have physical breast exam and if there is a problem then I’ll do a mammogram but won’t go looking for trouble again. The surgeon so far hasn’t pushed the mammmogram he and his nurse mention it but I just said no. My regular doctor is okay with it too as he agreed with me there is a lot of over diagnosis. I think it’s great that you are fighting back and as you said 4 years with no change what was the big rush let them monitor it they have all this wonderful technology so they claim let them use it now. Keep strong I’m so glad to see women are fighting back and thanks to Donna for giving is this supportive mechanism. Keeping you in my thoughts and prayers. Sincerely Janet

  42. informedconsent2014 says:

    Hi Janet,
    thanks so much for giving background on your story and all that you’ve gone through. It’s so important for all of us to know some specifics of what other women have gone through and the various scenarios that happen along the way. Even though some of the thinking and approaches have changed since 1999 when you first were diagnosed, a lot hasn’t changed, too. But at least your doctors seem to now realize that you no longer intend to go looking for trouble with mammograms. We are beginning to see the first signs that doctors are at least agreeing that there’s a lot of over diagnosis and unnecessary treatments and surgeries. I have definitely read similar cases to yours, where they do the pathology after mastectomy and see no residual DCIS, even though they claimed BEFORE surgery that there was a lot of DCIS lurking around or whatever. It seems like many times they don’t know what they are looking at. That’s why it’s so great to know about doctors like Dr. Lagios who does the second opinion pathology readings to fine-tune treatment or major surgery decisions. And also, just because it’s a “prestige” place like Dana Farber doesn’t mean they are aware of all the latest information or approaches. But I totally realize how and why you made the decision you made. Everyone is put into very tough spots by this overall situation. .

    The only thing any of us can do is educate ourselves and even then, it is very, very difficult when we are told there “might be something more we can’t see on the mammogram”. However, Dr. Esserman says the “bulk of what we find” is low grade DCIS – a NON-life threatening condition. When I refused the biopsy, I was told “a mammogram is just a picture – it can’t see everything that might be going on.” This remark is designed to scare and panic, the “what if???” idea, that there might be some ominous invasive cancer lurking beneath that can’t be seen on mammogram. But we can’t make decisions based on “what ifs”, or allow our bodies to be invaded “just because”. In 2011, I had an ultrasound when the microcalcs were seen on the mammogram, and nothing was found during that – no mass, no lurking tumor that the mammogram hadn’t picked up. Yes, mammograms are not perfect and do miss things. But that’s not good enough reason for me at this time to have a biopsy after monitoring calcs for four years that have basically not demonstrated any worriesome traits that would lead me to believe it’s something aggressive or life threatening. It seems to be behaving just as Dr. Esserman says most of these lesions behave – slow growing (if at all), and nothing that will put me at risk. I say this based on what the actual mammograms have shown over four years. for me, that’s a lot more scientific approach than leaping to a panic conclusion. .

    Also, when the “slight” change was reported in Dec. 2014, I obtained the films on CD so that I could view the “slight” changes for myself. (I always get all films, and all records after every mammogram). Unfortunately, there was no way to view a side by side comparison view on my computer, so I was not able to see for myself whatever “slight” increase the radiologist saw. I considered going in and having the radiologist specifically show it to me, but decided to wait to see if there was another change in my latest June mammogram (which there wasn’t). Therefore, I intend to go back to a yearly screening, as you say, their “great” technology that picks up the smallest little abnormalities. Whether my doctor will agree to continue doing that without a biopsy remains to be seen. Fighting back always comes with a price. But so does going with the flow.
    btw, just to update, I will be 60 years old in a few months, my only known “risk” factor is that i’ve never had children. I don’t smoke, I don’t drink, I’m not on HRT, and eat relatively healthy. There’s zero known family history of breast cancer. All these factors are part of my decisions, to the extent that I think any of them are relevant. Prayers and positive thoughts to you, also for continued success with your current approach. It sounds like you have a good medical support team in place who does listen to you and understands some of the really difficult issues involved. One patient at a time, we are changing things! Hang in there!

  43. informedconsent2014 says:

    Hi Donna and everyone
    I just had my follow-up appointment with my doctor to go over the June mammogram that showed no change since the December 2014. I indicated that because of this, I still did not want to have the biopsy, since there had only been one “slight” change since 2011. While he still says that it’s his recommendation to have the biopsy, he agreed to have me continue to monitor. Wanted me to do another six month follow-up in December, but I indicated I wanted to wait until at least January 2016 past the holidays and he said, “okay”. So, it’s a 7 month follow-up which I really don’t like due to the radiation exposure from mammography, but for now, it’s the best I can do as far as monitoring. I know for sure he wouldn’t have agreed to let me go til June 2016 on monitoring these calcs. Hopefully if there’s still no hew change in Jan. 2016, I can continue to support my view on the value of monitoring vs. jumping into an invasive, painful and expensive procedure such as a biopsy. I am also considering perhaps having a consult with Dr. Esserman next year, maybe a second opinion reading of my mammogram and to gather information which could be supportive of my current approach. I will keep you all posted as to the next finding and also will continue to post anything new or things that I think could be of value to us here, going through this journey! For now, no biopsy for me….a watching approach, which next year will be almost five years since the findings, with barely any change at all.

    • dp4peace says:

      Great to hear! Just remember, you are in charge of when and how you monitor. The docs have to recommend certain protocols to cover their asses, but if you decided to hold off a year, they will probably not turn you away….and if they do, well I would find a new doc! I was suppose to go back to the medical oncologist for checks every 3 mths…and mammos every 6 back in 2010! I waited 10 mths for the next mammo and after that never went back to the med oncologist and then never had another mammogram! My primary care physician has ordered my annual MRI since then and I have had no problems. Sure, they keep calling and sending letters to have mammograms, but that means NOTHING to me. I know you can not do MRI, but you can also consider bilateral ultrasound and thermogram as alternatives to mammograms. I just finished writing an article on the harms of mammograms (soon to be published for thetruthaboutcancer.com), and they are especially bad if you are premenopausal or have abnormal cells, certain genetic factors or DCIS. Here is a similar article that recently came out: http://www.hormonesmatter.com/mammography-screening-educated-consumer-best-customer/

      As Dr. Esserman has stated, we shouldn’t be looking so hard to find low-int grade DCIS.

      Thanks so much for sharing your journey and insights here!

      Love and blessings,
      Donna

      • informedconsent2014 says:

        Thanks so much as always for your support and encouragement Donna! I will definitely stand up for myself and put a stop to the six month mammograms. If going yearly isn’t good enough for my doc, then I’ll find one who respects my decisions on this. A yearly mammogram will give every bit as much info as a six month interval. It’s overkill in many cases to continue on and on with 6 month monitoring instead of 12 months.

        I absolutely do feel that mammograms create harm and I feel in the years ahead, we’ll see more and more evidence of that. I am postmenopausal but I am very worried about the radiation exposure to breast cells that may be prone to harm. I think it’s awesome that you didn’t keep going for mammograms – if you’d followed the “protocol” you’d have had tons of them since 2010. It’s just absurd what the medical world puts us through, the CYA for them and not based on health, or even minimal scientific evidence that the constant screening is not only potentially quite harmful but oftentimes is USELESS. I just read the latest report about women with Stage 1 and Stage 2 breast cancer being put through too much scanning (PET and CAT scans). All we can do is keep hammering away and stand up and be counted. As Dr. Esserman and others have said, ultimately it’s the patients themselves who will bring reason and sanity into this scenario. Thank you again for you great suggestions and help, I always take it to heart! Hugs!

  44. Robin says:

    I was diagnosed with DCIS stage 0, her +, in 2008. I had lumpectomy, 33 radiation treatments, tamoxifen for 5 years. I was 40 years old when diagnosed from my first mammo. I was told this was my cure. I know now that Tamoxifen caused more damage to my body than good. I had two surgeries due to rumors from tamoxifen. I feel like I should have be told that I could only do radiation once, I would have waited to see if the cancer returned. The doctors convinced me that by following this treatment I would be cured with no chance of recurrence.
    In May 2015, I was called back to have second mammo. Calcification a were back and scheduled a needle bcs biopsy-July 2015. I chose to wait for biopsy due to grandbaby expected. The results came back 7 out of ten slides showed DCIS was back. No margins were given. The surgeon, oncologist, second opinion surgeon said mastectomy is the only cure! One surgeon recommended medicine for next five years again as a preventative. Why do I have to take medicine if mastectomy is my cure?
    I was told only couple of days for healing from the biopsy, the pain from the cutting of nerves and tissue is excruciating at times. Doctor said this was my way of know they were healing!
    I am looking to do diet, exercise, emotional therapy, watch and see. I have researched the bio-mat that heats your body to a temperature that cancer cells can not live in and helps relax you. I appreciate the references posted in my search for right treatment for me. All my doctors are fighting my decision. They are still saying mastectomy is the only treatment available.
    My family and friends are concerned about my choices. I feel they are the right choice for me. If I am cancer free, why am I removing healthy tissue? To prevent something that was not suppose to come back because of the previous treatment? 10% chance of reoccurrence is not high enough for me to see removing healthy tissue, stress of surgery, emotional trauma after surgery! 90% chance it will not come back!
    Any doctors that will walk this journey with me?
    Thanks to those that have posted on this site! Helpful to know I am not the only one that believes I was over treated the first time and scared by the treatment options this time! I am more fearful of the treatment than the DCIS!
    Small town girl

    • Rebecca Deras says:

      I’m afraid I have no suggestions, but thanks for your post. I’m 40 and was recently diagnosed with DCIS. I’m trying to figure out a path that makes sense to me and I totally understand where you are coming from. I am initially planned to do the lumpectomy, re-excisions that might be necessary, and the radiation. I’m not planning on the Tamoxifen and the medical oncologist agreed with me that the meds weren’t indicated because of potential side effects. Sorry you had the side effects, and overall I’m also worried that the treatment for this thing that might not even be an illness is worse than just leaving it alone! I wish you the best!

  45. Sandra Quintero says:

    I was diagnosed with dcis. Stage 0 1 1/2 yrs ago am taking tamoxifen. I want to stop taking it I have side affects from it. I want to know if with a healthy diet and regular screening that I’ll be alright.

  46. Sheila hates says:

    just dx yesterday with DCIS. Going for MRI tomorrow. Appt with breast surgeon sept 23! I am terrified! I am 48 years old and the mother of 3. A friend of mine who is a pathologist said that this dx was my warning to keep a close watch on myself . I had a routine mammogram that showed small cluster of microcalcification and had biopsy done to confirm. Pathology friend said to find out what type and grade. He said these abnormal cells aren’t smart enuf to figure out how to get out of the milk duct! I sure hope so! But I really need support right now and thank you

    • Milly says:

      I kno the feeling when they told me I had DCIS las t September. I had the biopsy and that was a painful recovery, I had swelling two weeks later. They came back from pathology and said it was DCIS but I refused the biopsy in my second breast. They wanted to do the lumpectomy, radiation etc. but I felt I was being pushed and scared into it, the surgeon told me it could spread to my lymph nodes. Instead I went to memorial Sloan Kettering hospital. The did a surgical biopsy instead of the lumpectomy. It gives a walnut size sample instead of the tiny biopsy sample, still smaller surgery thank lumpectomy would have been. A team of pathologists said it was not cancer. I have ADH, non cancerous. First surgeon told me the pathologist was world renowned, unlikely to misdiagnose. I’m glad I went for second opinion. I had calcifications and just had my six month mammo, all good. Get several opinions and don’t get pressured.

  47. Rebecca Deras says:

    Just looking for feedback and any suggestions out there. I’m 40 and have no family history or risk factors for cancer. I’ve been a vegetarian for years, eat healthfully and organically, but as a social worker my stress has been high overall. Had my first mammogram and microcalcifications were found. Fast forward to tonight and I’ve had a biopsy (lots of cancer cells found in the calcifications), MRI, genetic testing, lumpectomy with bad margins, a re-excision with more bad margins, and have a second re-excision scheduled in a few weeks. I have a bad feeling that these re-excisions will yield more cancer cells. My team of doctors appear very good and I trust my surgeon, but I also understand that she is also following traditional medicine’s “standard of care”. I am only 40 and have 2 young kids, so I have a lot to consider regarding how invasive I let all of this get. If it were just me I’d “watch and wait”, but I don’t feel I can take any chances because of my kids. Meanwhile, I feel fine and wonder if these cells are getting way over-reacted to. Was planning to do radiation but not Tamoxifen, but now who knows? I also haven’t had a period in almost 3 months since I quit taking birth control when I got diagnosed, so there’s that too. AAGH! Any educated/experienced suggestions out there? Thanks so much.

  48. Rebecca Deras says:

    Also, it was stage 0, grade 1 DCIS. They have taken out about 4 cm and a “slice” more in the re-excision as of now…..

  49. Dr. Zsuzsanna Suba says:

    Comment
    The low but consistent incidence rate of invasive breast cancer deriving from ductal in situ carcinoma (DCIS) justifies that the usual surgical and adjuvant therapy of high grade DCIS is not always capable of ensuring a tumor-free life, while low grade DCIS is perhaps superfluously over treated.
    Appropriate estrogen receptor (ER)-signaling is the chief safeguard of genomic stability in strong interplay with DNA-controlling and repairing systems, such as BRCA-genes and their protein products [http://goo.gl/EsB1bK]. Detection of DCIS by mammographic screening may be regarded as an early marker of disturbed hormonal, metabolic and DNA-stabilizer equilibrium, since the female breast is exquisitely sensitive to the defects of estrogen signaling [http://goo.gl/xRh4wL]. The stronger the defect of cellular estrogen surveillance, the higher is the probability of DCIS development with high-risk characteristics.
    Among young cases with active ovarian estrogen synthesis, the relatively higher risk of poorly differentiated DCIS may be attributed to the low incidence rate of more successfully suppressed ER-positive cancers rather than an excessive inclination to ER-negative tumors. Moreover, among dark-skinned American women, the higher risk of developing poorly differentiated DCIS and the higher breast cancer mortality rate as compared with white women are associated with estrogen deficiency and further hormonal defects. These endocrine disturbances may be explained by the incongruence between their excessive pigmentation and the poor light and sunshine exposure of North-America.
    [http://dx.doi.org/10.2174/157489212801820048].
    In women, during aging, progressive weakening of estrogen signaling and the associated gene stabilizer mechanisms are dangerous systemic processes [http://goo.gl/yiYszF], despite any usual, aggressive treatment of DCIS. In patients having increased risk of invasive breast cancer, natural estrogen substitution is the optimal risk-reducing therapy aiming the stabilization of gene regulatory processes and the apoptotic death of accidentally initiated tumor cells [http://dx.doi.org/10.2147/dddt.s89536]. By contrast, antiestrogen treatment against tumor recurrence may be risky, being effective only in such genetically proficient women who are capable of strong, counteractive upregulation of estrogen signaling. Tumor growth may be provoked by de novo or acquired antiestrogen resistance being associated with the missing capacity of patients for the extreme upregulation of estrogen signaling or with the exhaustion of defensive counteractions by excessive antiestrogen administration [http://dx.doi.org/10.2147/dddt.s89536].
    In conclusion, in cases of DCIS which have been diagnosed, the most important preventive strategy against invasive breast cancer development is to combine lumpectomy with strict control and maintenance of estrogen signaling over a whole lifetime.
    Zsuzsanna Suba

  50. Samantha says:

    I just had a diagnostic mammogram, and it appears to be DCIS. I have maybe 5 calcifications along a milk duct, such a small number of dots it’s not funny. What I want to talk about is the hounding the breast health people engage in to get you to do something immediately. When I was shown the mammogram of the calcifications, the radiologist said ‘we’ll have a plan before you leave here today’. I said ‘can I think about it?’ What I really meant was ‘I’m do my own planning, thank you very much.’ That was on Friday. Now Monday afternoon, I get a call from the breast center, wanting to know if I have questions, etc. In breast health language that means – can I schedule you for a biopsy? Can I twist your arm a little harder and induce a little more panic so you’ll enter into our web. Is it any wonder that women go away from these places hysterical? They promote panic by their urgency. Look, if this thing can’t sit here for a week or even a month while I make a logical, well-informed decision on treatment options, then I’m a goner anyway. Nothing they can do will stop a cancer like that. I went through the same urgency when I had an fibroademona many years ago. And it was clearly not malignant from their ultrasound but off to biopsy I went. I take birth control pills so I’m wondering if I stop them (I’m 47) if this area will correct itself. But, oh, no, we can’t take a watch and wait attitude. Nope, got to get you into our web. I know I sound cynical, but this behavior is ridiculous when there’s not even a lump to be felt. I did make an appointment with a breast surgeon I saw back when I had the firbo so I am doing something. I just want to take this at my pace and not let fear rush me into something that I’ll regret or don’t even need. Anyone else experience this urgency with the breast health industry?

    • informedconsent2014 says:

      Hi Samantha,
      I definitely experienced the same urgency/arm twisting that you’re going through. Back in 2011, a small 9mm cluster of microcalcs was found. I’m 59 now, so I was about 54 at the time. I was told to get a biopsy, and when I asked the breast surgeon if I could wait six months until a family member could be in town to be with me for the biopsy, he practically screamed at me and said in a big panic tone, “I wouldn’t wait three months!!!!” Luckily for me……I had already done my homework before even going into his office so I got my files and walked out. I received a number of follow up phone calls from his office, pushing for biopsy, and I told them I was taking my time and had done some looking into this matter of microcalcs. They finally stopped calling me and bugging me. Now it’s 2015, and during all that time and multiple follow up mammograms, the cluster of calcs has only changed in a very minor way ONE time. My internist has had to back off me and agree to not push me into a biopsy, although he’s still grouchy about it. But I do feel vindicated that I made the right decision not to rush into an invasive biopsy. It’s obvious to me that the breast surgeon was putting on a hysteria act. He hadn’t even seen the mammograms on me, because I asked him. He said, “no, I don’t have the lighting box that the radiology people use”. So, all he had was a radiology report recommending biopsy, and on that basis, he went into his song and dance. He lost all credibility in my eyes when he said I didn’t even have three months to wait! How laughable.

      I’ve also received several registered letters from the radiology department, indicating that a biopsy has been recommended. This is all legal “CYA” on their part designed to make it a scary, urgent feeling, and to prove prove prove to their lawyers that I received their biopsy recommendation. I just file the letters in my ongoing file. I suppose I’ll have quite a stack eventually.

      The most important thing to remember is that microcalcs in most cases are NOT a life threatening health emergency that requires an immediate decision, whether it be to have a biopsy or taking time to consider various treatment options. We know this now. The cat is out of the bag. I feel lucky that I had the foresight to do my own research into this before falling for their hysteria mode. Dr. Laura Esserman and others emphasize again and again that microcalcs are not an immediate emergency health matter. In most cases, even IF it’s a DCIS, it grows so slowly that it may be years (if ever) before enough has changed to even merit intervention or treatment, much less rushing into a biopsy. So, yes, I was subjected to arm twisting but I came “armed” with facts, and that’s what shut them all up. I continue to monitor the abnormality that was found in 2011, next mammogram scheduled for Jan 2016. If nothing or not much has changed, I am going to again refuse biopsy. Hopefully I will be able to stay the course and not be pushed or bullied into the biopsy, which I’m well aware could immediately put me on the “breast cancer” merry go round UNnecessarily. Hang in there, knowledge is power!

  51. Judy Schwartz says:

    Hi Samantha, The day I was diagnosed the Dr. that read the mammogram told me that I had to have a mastectomy. Then my Dr. was out of town so her Nurse called me and told me if you are going to have one you may as well have both removed. They told me that I had to have the biopsy the next day and I was too dumb to question it.
    I did find an excellent surgeon from a friends recommendation and I did oncoplasty, mine was large so I did not do the watching and waiting approach.
    I now have worked with a Naturopath for 2 years and I am doing great. I have been watching the truth about Cancer and wish I had seen it before I went thru my ordeal. I had the radiation and if I had to do it again I would not have done that.
    Good Luck and don’t let them bully you into making a decision, do your own research to find what is best for you.
    Best,
    Judy Schwartz

    • Karen says:

      Hi Just wondering if any women out there with stage O”, low grade DCIS, is just monitoring for any changes i.e., mammograms and MRI and eating fruits veggies no sugars, workout, etc and not opting for any surgery such as mastectomy or lumpectomy. I feel this diagnosis is over rated in how treatment should be done. Any sharing of thoughts would be appreciated. Karen

      • Wendy says:

        Hi Karen,

        I was diagnosed with low to intermediate grade DCIS in June 2014. I’ve had a lumpectomy and a biopsy. The first surgeon I went to told me I needed a full mastectomy and that I had a few weeks to decided. I walked out of her office and found another doctor. Since DCIS is NOT, cancer, I am going to take watch and see approach. I will have my annual MRI in the next few months. I am no longer allowing these crazy doctors to scare me into unnecessary treatments.

        Wendy

      • Karen,
        I was diagnosed with Small Calcifications when I was 40. When I was 43, I was diagnosed with Flat Epithelial Atypia after having a stereotactic core biopsy. For the past 4 years, doctors keep saying I need a surgical biopsy even though the calcifications have NOT changed.

        I had lived a natural lifestyle for 20 years, then at 39, I stepped it up a notch and started living a holistic, organic lifestyle. Nothing goes in or on my body unless it is organic. I do believe that my lifestyle has contributed to my calcifications NOT changing. When I went Thursday for my yearly mammogram, the doctor advised alternating a MRI with a mammogram every 6 months. I don’t think I will do it because I have read too much studies about false positives for people with calcifiactions.

        When I was 43, I got a second opinion from a breast cancer surgeon who caters to the wealthy. He said unless you are diagnosed with Stage 1 cancer, you do NOT have cancer, so don’t treat your condition as if you do.

        Mistress Susan

      • Holly Ridgley says:

        Karen,
        I am monitoring. I had my 2 year scan today. I am clear. I do not even have clean margins from the original lumpectomy. I opted not to do another lumpectomy as it was 10k per surgery and I did not want a deformed breast, which is my choice. I also did not do radiation or tamoxifen either. I am really happy with my choice as of today! My oncologist battled with me but I do not care. My body. My choice.

      • Karen says:

        Thx for reply… May I ask if you seeing a holistic doctor? I am taking good vitamins and watching my ph in my body which is important. My stage is 0. Karen

        Sent from my iPhone

        >

  52. Priscilla Thompkins says:

    Please add me to emails

    • dp4peace says:

      Hi Priscilla, Please make sure you click “follow” and you will receive an email with each new post. Thanks for your interest!🙂 Donna

    • Malignant tumor cells are integrative parts of the body, although they are embarrassed by the partial loss of intranuclear control of DNA replication. They require domestication instead of radical killing. DCIS is an early sign of defective estrogen signaling and the associated disturbance of genome stabilization. In any phase of breast cancer, the use of three classic anticancer weapons (mutilation, radiation and chemotherapy) is harmful and results in higher breast cancer related mortality. Both DCIS and other stages of BC may be cured by lumpectomy and restoration of estrogen signaling. Long term care of hormonal equilibrium is more important than monitoring by mammography.

  53. Kristi Stedman says:

    I was diagnosed with DCIS at Kaiser last month. The first radiologist said we could just watch it for 6 mos & recheck. I said I was losing my insurance Jan 1, so wanted to take care of it ASAP. Had a needle biopsy. The area of concern is only 8 mm & I am nearly 61 yrs old with no family history of breast cancer on either side of family. Yesterday consulted with surgeon. Talked about lumpectomy & radiation. When he said “DCIS isn’t cancer but a pre-cancerous condition” it led me to research the why of having radiation. After researching, I found Dr Esserman and others who’s opinion of taking a wait & see approach for a person my age & with my risk factors. I am pretty sure now that I am going to wait & forgo the lumpectomy.

    • Karen says:

      Hi Kristi. Sorry about your diagnosis. I have stage 0 low grade and have decided to monitor..I’ve read it could take years to become invasive or never become invasive. I truly believe if you watch what you eat, keep vit D levels normal exercise a lot and low stress you can be okay. May I ask where this doctor you wrote about is located? How are you being monitored? Good luck

  54. Missie B says:

    Thanks so very much for your site. I’ve been searching for the last 30 days because I too feel I am being pushed/frightened into ingesting 5 years of Tamoxifen or one of the three Aromatase Inhibitors—without a proper pause given for the high risk of potentially life-ending side effects of these drugs. At 61, with a diagnosis of papillomas to remove (or taking a wait & see approach) I opted after 6 months of fretting to have them removed. The surgery included an unexpected lumpectomy, with path report showing a single block (out of 35) of DCIS, low grade, cribiform and solid, 3 mm and missing a “clean” 1 cm margin, which prompted a quick re-excision to get that margin. (I also have extensive atypical hyperplasia, the calcifications–which were deemed benign many years ago and simply watched in the interim, and am ER+ and PR+–like 95% and 90% respectively.)My surgeon is very nice, but continues to insist I start a drug regimen, no doubt sensing my grave doubt about doing so.

    So Kale has become my new friend. Luckily, I like it and all its cousins, always have. I’m on the fence about the drugs and haven’t seen or read anything to convince me to assume the risks associated with consuming 5 years of these drugs. (Neither radiation, further surgery, nor chemo was called for in my case, per my surgeon and her medical board.) I’ve never taken any drugs, and other than the unexpected DCIS finding am otherwise exceeding healthy (the surgical nurses called me a dream patient because I have no illnesses at my age.) My weight is about 10 lbs above preferred, so I’m working out, watching fats and sugars, etc.(I am on the border of osteo, so that needs attention as well.)

    Ultimately, I don’t know what to do. There are no close relatives with BC in my family, not really much cancer of any kind. Per the VNPI, I’m a 4 on a potential point value of 12–seems my risk of recurrence is very low.

    Some days, it seems like a dream. Do I have BC? Or did I just have surgery to remove some damaged, unnecessary diseased tissue? Am I in denial? Maybe.

  55. Holly Ridgley says:

    Hi Donna,

    I just had to share with you that I just returned from my annual scan. I was given a DCIS diagnosis 1/2014. After the original lumpectomy which was 10k I elected to do nothing. My oncologist begged me to have more of my right breast removed. I refused (but Iam stubborn). I changed my diet and tried to reduce stress. I work out as often as possible and no longer work in the full time rat race. Point being-my DCIS is STABLE! I am simply astounded that they wanted to disfigure my breast and give me radiation and tamoxifen. Of course, I will continue to monitor and report back to your site. I feel compelled to share this with your readers. It is a very happy day. However, due to legalities, this is not to be construed as medical advice.

    Holly Ridgley NP
    Atlanta, GA

    • Karen says:

      Hi Holly: I was dx with low grade DCIS last June, mastectomy was offered. I have had 1 follow up mammogram and MRI..no changes. What type of follow up/monitoring are you having done.
      I’m not a fan of surgery if not necessary nor taking tamoxifen..many bad side effects. I’m changing my diet to more veggies and hardly any sugar. Also taking tumeric, estrodim, reservasol (spelling) and eating alot of cauliflower and broccli. Also drinking matcha green tea.

      Just wanted to see what type of follow up you are doing and frequency.

      Thanks,

      Karen

    • Wendy says:

      Holly,

      Thanks so much for sharing your story. I was diagnosed with intermediate grade DCIS in 4/2014. I haved three doctors tell me I should have a mastectomy, but I am stubborn as well. I just had another MRI and the results indicate there have not been any changes since my diagnosis. I thought about getting an oncoplastic reduction, but after speaking to the plastic surgeon and learning that all he would be doing is moving the placement of my nippIes am considering just leaving well enough alone. It saddens me that we don’t have more options. Feeling frustrated!

      Wendy

      • informedconsent2014 says:

        Hi Wendy! Have you thought about getting a second pathology opinion from Dr. Michael Lagios? Even though you’ve seen three doctors who are all recommending the same thing, if they are part of the “standard of care” system, they will all say what they’re expected to say. I think it’s so important for any woman with a DCIS diagnosis to look outside the usual areas and consult with the current experts on DCIS, people like Dr. Laura Esserman at UCSF and Dr. Lagios. It’s so hard to find what we need in this situation! Your frustration is very understandable!

      • Wendy says:

        Yes…informedconsent2014 I had Dr. Lagios review my pathology report and he recommended a skin sparing mastectomy, but he did suggest I consider seeing Dr. Mel Silverstein who is pioneering extreme oncoplastic reduction surgery. The challenge is I am in Atlanta and Dr. Silverstein is in CA. I met with a surgeon in Atlanta that is willing to do the oncoplastic reduction, but I am not crazy with the plastic surgery part. It would not be a real lift or reduction. They would only replace the nippIes up a little higher after the oncologist removes the DCIS. So basically, I would be having major surgery to remove some wayward cells and my breast would not look much different then how they look now. Where is the silver lining? Ughh

      • informedconsent2014 says:

        Hi Wendy, yes, it’s really hard to get special consultations with experts when you live far away. Many of us can’t travel wherever and whenever we want to get the best advice. From all I’ve read about DCIS, it’s slow growing and in some cases barely changes over time. If your gut is telling you to continue to monitor rather than jumping into a major surgery, then that’s what you should do, and continue to monitor in the safest ways possible. Major life changing surgery definitely needs to be considered very carefully before jumping into something that might be the wrong thing to do. Hopefully in the next 5 years, we’ll see new protocols, new types of surgeries and new ways to monitor DCIS. Maybe the silver lining, is forums like this, women like you, Donna, and others here who are grappling with this very confusing medical scenario. All any of us can do is stay educated and informed and I’m sure that’s what you’re doing, all the way! I really feel that those of us who are questioning how DCIS is treated and managed will be the ones to change the protocols down the road so that we can all benefit and stay whole and healthy!

      • Wendy says:

        Thanks for the encouraging words informedconsent2014. If it was not for Donna and this forum, who’s what my situation would be. I will continue to walk my own path and hopefully over time we will see changes in the treatment or non-treatment of DCIS.

    • dp4peace says:

      Hi Holly! Sorry for the delayed reply…Thanks so much for posting your good news and experiences. It really helps everyone to hear from women like you who take healthy action over fear, pressures, intimidation and disfigurement Blessings for continued health and wellness, Donna

    • Robin says:

      I was just diagnosed with dcis. So nice to hear good news!

    • Robin says:

      Holly, was your dcis grade 1,2, or 3?

  56. Holly says:

    Karen,

    I follow up with a regular mammogram yearly. I was diagnosed with stage 2 DCIS 1/2014. I did an original lumpectomy BUT they did not get clear margins. I REFUSED to another one at another 10k. I just wait and monitor. I am a Nurse Practitioner, but in Georgia we must have a collaborating MD. My MD at work told me that his sister got all the recommended mammograms every year and STILL PASSED of breast cancer in her 60’s. This is not an exact science as you well know. I try to eat clean, exercise and work on my mental health (tough with 3 sons at home!) But so far I KNOW that I have made the right decision for myself. I cannot imagine radiation, tamoxifen or radiation. I also refuse to decimate my right breast. I do not care what anyone says but I am still young enough that I want to look and feel my best. Please research MD Anderson and their findings on a sugar diet and cancer (yes they are utilizing metformin in clinical studies) along with chemo. These are truly amazing times and we must support each other.

    Holly Ridgley NP
    Atlanta, GA

    • Karen says:

      Hi. I just have stage 0 DCIS and try to eat good hardly any sugars went to a holistic dr really liked her

      Sent from my iPhone

      >

    • dp4peace says:

      Thanks for sharing Holly. You may want to look into “dedicated” breast MRI for follow up as I have done for the last 4 years. Mammograms find too much DCIS and cause way too many alarms and unnecessary scare, biopsies, surgeries and all the rest. Also another new technology to consider is SONOCINE Automated Whole Breast Ultrasound.http://www.sonocine.com/united-states/ No radiation, no contrast dye. Also thermograms in between. Mammograms are not a good screening or monitoring tool in my opinion and years of research! I am presently writing a book on this topic as I have so much info and studies that are just not getting out into the mainstream. The harms are not being told to women by doctors, hospitals, media, etc and this is a serious women’s health injustice. Many conflicts of interest. I would look deeply into who is pushing mammography and what their conflicts of interest may be.

      • informedconsent2014 says:

        so great to know you’re writing a book about this terrible problem of overdiagnosis/overtreatment of DCIS! That’s fabulous and will get the word out to millions of women! I will definitely support your efforts! And yes, there’s a ton of conflict of interest, with various doctors being owner or part owner of screening facilities. They will never admit this to their patients, but it is a part of the problem!

  57. Robin Auerbach says:

    Hi Donna! Thanks so much for your site! I was just diagnosed with adh borderline dcis. How are you doing now? Are you still on active surveillance?

    • dp4peace says:

      Hi Robin! I It makes me happy when people like you find my site…I am doing great. Have been monitoring with dedicated breast MRI for the last 4 years and all is clear, If I had to do it over, I would have not done immediate “wide excision” surgery after ADH diagnosis from needle biopsy. Please feel free to ask my anything as I know it can play tricks on your mind. Please also check out resources and studies on http://www.dcisredfined.org Blessings, Donna

      • Robin says:

        Thank you!! I am scheduling a lumpectomy. Mine is multifocal 3 cm. Mri was totally clear. My fear right now is that the lumpectomy will show more or an upgrade? If it were grade 3 would it most likely show up on Mri? I liked your dcis411 on fb and sent u a private message to your personal fb page.

  58. carol says:

    Just diagnosed by a mammogram looked back micro calfication was ony 2013 mammogram. How do I get someone to relook at the 2013 mammogram and one done in November and the diagnostic mammogram and us just done to see of I do need a biospy. They where really pishy when I did the diagnostic mammogram and us. Just felt uncomfortable. The radiologist was real pushy but he was doing some double speak he said need to biopsy like it was an emergency but when there where scheduling they could not do it right away said it was not an emergency. I am going to postpone. I have the scans want someone to look at those then telle I need to go further especially after reading stuff like this. Kinda need to step back breathe not let th bully me. The medical status quo does not treat women the same as men
    My brother goes with his wife and says same thing

    • Carol, are you saying that you still have microcalcification 3 years later, so they want to do a biopsy?

      • carol says:

        That exactly what I am saying and the us said no mass seen small cyst at 10/o’clock no mass was not evident. But mamgram show suspicious micrcalfication. The same radiologist read mammogram and wrote the note on us. But he couldn’t lie on us as the he and the tech both did a us. Nothing found. Looked at my chart found 2013/show micro calculations said benign.

      • Here’s my experience. I had microcalcification for 3 years before getting a needle biopsy. The doctors said that even though the mammogram showed that they are probably benign, there was still a 20% chance that something was wrong. As far as I know, microcalcification doesn’t show up on an ultrasound since it is not a lump.

        I chose to get a biopsy ONLY because Sheryl Crow, like me, lived a healthy lifestyle and had microcacification, which, in her case, turned out to be Stage 1 cancer. After my needle biopsy, it was discovered that I had just abnormal breast cells. They want me to have a partial mascectomy, but for the past 3.5 years since the diagnosis, I have said, “No way.” I continue to live an organic lifestyle.

      • Robin says:

        Hi. So you have adh? Are you just doing 6 month checks?

      • Flat epithelial atypia. No, I refuse to do a mammogram and MRI every alternating 6 montsh. I just do a yearly mammogram because I refuse to let breast issues consume my life. I live an organic lifestyle, exercise daily, am working on decreasing stress and write in a gratitude journal. That’s all I can do. I have had flat epithelial atypia for 7 years, so I am just going to let the chips fall however way they fall.

      • Robin says:

        Good for you! I was just diagnosed with adh and one tiny spot that is borderline Adh dcis.

      • Oh, I see. The only thing I can tell you Robin is, for me, I had to turn the situation over to a Higher Power. We can get tested and have surgeries a million times and still be stuck with the same situation. I focus on my overall health because none of us knows what hidden sicknesses we may have that are undiagnosed. I have a strong peace of mind and am always in that mode of being strong enough to be prepared for anything – good or bad.

        I got my records read by a breast cancer surgeon who used to serve the wealthy, and he said the most important thing I have ever heard about breast issues: If you don’t have at least Stage 1 Cancer, then do NOT treat your condition like you do have it.

        During my research, I came across stats once of women who have died, and it said that coroners will tell you from there experience of doing autopsies that that a high percentage of women have non-cancer breast issues, but they didn’t die from it.

      • Robin says:

        I totally agree. My surgeon said that an oncologist that looked at my pathology suggested maybe radiation because of the tiny amount of borderline Adh dcis (that is with the adh) and my age. I am 46. This to me is ridiculous.

      • I’m 47, and that is completely ridiculous. My motto is: I’m not going to bankroll a doctor’s lifestyle.

      • Robin says:

        Exactly!! Thank you for your story and I wish you good health!!

  59. joan says:

    I was diagnosed with dcis high grade in 2010 had a lumpectomy but only completed a few rounds of radiotherapy because of very red angry breast and generally feeling ill had follow ups mammogram in Nov 2015 and it’s come back had a biopsy showing med to high grade dcis surgeon wanted me to have a mastectomy I had second opinion with breast reconstruction doc and breast surgeon suggested I have dcis cut out keep my breast and have other one made smaller I’m large breast ed but found out op would take ten hours and because I have other health probs original surgeon and oncologist saying it’s not a good idea and to have mastectomy and if possible new breast and other made smaller I’m all over the place all this seems drastic to me any input would be gratefully received

  60. Kimberly says:

    Seriously? You think dcis should just be left alone? Left alone nothing will happen? This website has made me more confused. I have had two lumpectomy to remove dcis with no success. Md thinks I should have mastectomy. So you think I should let it go because the chances of invasive breast cancer is rare? So your doing well with no surgery? Your holistic healing is all your doing?

    • dp4peace says:

      I too was in a similar situation and had 3 “unsuccessful” surgeries…and told numerous times and by numerous Drs to have mastectomy due to close margin. I was told “don’t be stupid” by my surgeon as she tried to convince me to have at least a 3 week dose of radiation. That was 4 years ago…I did not succumb to their scare tactics. I have done NOTHING further other than what’s on my “holistic healing plan.” I am not saying my path is for everyone. What I am saying is every women must take all the information they can possibly gather about their unique individual situation and pathology and then listen to her gut / intuition. I gathered a great deal of personal information — 2nd pathology opinion, oncotype test plus looked at the studies and statistics. Even with grim statistics, I chose no further surgery, no radiation and no tamoxifen. I am beyond grateful for the path I chose — and only wish I had found Dr. Laura Esserman and Dr. Shelley Hwang before I had the 1st surgery (which was a wide-excision biopsy due to ADH resulting from needle biopsy). I believe a lot of MDs are overly scaring women to have their treatments due to fear of law suits and that is what the “standard of care” is at their hospital or medical center. They are ingrained in a system of treatment that is notorious for being inaccurate, inconclusive and biased towards the most aggressive one-size-fits-all protocols. Confusion will be alleviated with education. It takes time to understand. I made this site to help get the other side of the DCIS story out there — this information is often not provided by many Drs and if you bring it to them they may poo-poo it and belittle you for even bringing up such questions reagrding “standard of care’ protocols.” I spent countless hours (now 6 years) doing the research to help women make informed and individualized decisions. Is it easy? NO. Is it terrifying. At first. But once you take the time to understand and become empowered, then you will hopefully find the right decisions for you from a sense of calm, peace and understanding (not fear). The path that I chose is not for everyone. But if one chooses this path, I offer my heart-felt support and resources that I spent hours and hours investigating. Please read my whole story under “Donna’s Journey.” I did have 3 surgeries before I said NO MORE…and I have been monitoring with dedicated breast MRI, ultrasound and thermogram annually since. I am doing great and I do not fear cancer. I wish every woman could have what I have been blessed with…peace of mind is what we all seek no matter what our decisions. Blessings to you and all who may be in a similar situation. My heart goes out to you. Donna

      • Wendy says:

        I was diagnosed in 2014 with low to intermediate grade DCIS and was told I should have a masectomy “right away” it’s been two years since my first surgical biopsy and there has not been a change in the amount of DCIS. I have not ruled out more surgery, but I am weighing my options and making sure I feel 100% comfortable before doing anything else. Most doctors just want to do surgery to avoid lawsuits with no regard for what is best for their patients. Hang in there Kimberly, you have options.

      • Mastectomy as a therapeutic measure against breast cancer is a medical mistake. Long term studies justify that mastectomy results in higher BC-related mortality as compared with lumpectomy. At the margin of mammary tumor, there are defensive cells producing mediators and hormones against cancer spread. Mastectomy, radiation and chemotherapy aggressively extirpate these defensive forces and the desolated environment is hospitable for the initiation of newly developing cancer from breast cells left behind. Maintenance of hormonal equilibrium, estrogen signaling in particular is the real prevention of BC for a lifetime.

      • carol jessie says:

        Wendy I read that there are a lot of doctors that are rethinking treatment. I did not jump and do a biosopy, dur to me getting pneumonia. I finally over that, I have also done tons of reading that this is not an emergency. Also, I had the caifacations on 2013. And my ultrasound was clean.gonna send my studies off to be reread

      • carol jessie says:

        My docs office called and wanted me to redo a mamo this fall. I told her her yes. I had an appointment with a oncology doc. Changed my mind as I was jumping in the fire. When I read that I have a 2% chance in dying from this this once o got over the initial shock started reading. I am satisfied with my decision.. It is not am emergency don’t treat it as one

      • Wendy says:

        Hi Zsuzsanna,

        Do you have recommendations on how to maintain hormonal equilibrium? I am working with an intergrative medical practice that has me on iodine and Thyriod support supplements, but I am wondering what else I could do. My DCIS is HER positive. There has to be a natural alternative to Tamoxifen…

        Thank you!

        Wendy

      • I’m still taking 2 drops of Lugol 2% iodine daily since I have hypothyroidism. I also sprinkle seaweed on everything I eat. Everything is about balance, but the problem is it is hard to figure out what will bring you back into balance. Wendy, what type of iodine and thyroid supplements are you on?

      • Wendy says:

        Hey M. Susan,

        I am taking Iodoral and nature throid along with a bunch of vitamins. I have follow-ups with labs every 60 days.

      • Restoration of estrogen signaling is the crucial means against cancer recurrence. Upregulation of thyroid synthesis is important by iodine and selenium treatment, when your thyroid stimulating hormone (TSH) is elevated. Vitamin D supplementation is also an anticancer measure. Insulin resistance (increased glucose level) is dangerous, diet and metformin treatment is useful.
        I answer all your further questions.

      • Tamoxifen is dangerous, since it blocks estrogen receptors and only in genetically proficient cases (30%) can achieve compensatory strong upregulation of estrogen signaling. This effect is transient as exhaustion of protein synthesis results in perfect blockade of ERs and consequent tumor growth. This phase is mistakenly regarded as antiestrogen resistance.

    • carol jessie says:

      It’s hard to know what to do, I am.in process to have my mamgrams reread then I will go from there not gonna let anyone scare me. Do a lot of reading on dcis before surgery.

  61. dp4peace says:

    Great question for Zsuzsanna Wendy. I was going to ask myself as there is a lot of confusion and conflicting info out there on hormonal balance. I look forward to Zsuzsanna’s response!

    • Dear Wendy,
      There is a lot of confusion and conflicting info even in doctors’ minds. There is no direct correlation between estrogen concentrations (in serum, and breast tissue) and tumor growths; however, appropriate binding between estrogens and their receptors (estrogen signaling) is the prerequisite for healthy life. Estrogen bound estrogen receptor as transcriptional factor in nucleus is the crucial point of genome stabilizer network, and we have the tools in hand (such as natural estrogen administration and control of other hormonal functions) for prevention and cure all human diseases, even cancer. Natural estrogen treatment is capable of upregulation of both estrogen receptor expression and genome stabilizer proteins. Breast cancer patients should be brave and recommend my scientific works for their doctors. (Suba Z; indexed by Google, Pubmed, Medline, etc.). This will help for you and for all other patients being in desperate situation. I am ready to answer all your questions.

      • Wendy says:

        Hi Zsuzsanna,

        Thank you so much for responding. I will checkout the references you provided.

        Wendy

      • Karen says:

        Hi. Just wondering if anyone ever just decided to monitor stage 0 low grade DCIS without any surgery? If so how are you monitoring this? Thermography? Mam? MRI? U/S? Hope to hear from someone I keep reading that DCIS is pre-cancer thx Sent from my iPhone

        >

      • Robin auerbach says:

        I had 3 mm low grade dcis. In fact one pathology report came back as adh. Had lumpectomy with clear margins. No radiation. Started tamoxifen.

      • Low grade small DCIS lesion is an early, localized sign of defective systemic estrogen signaling and the associated disturbance of genome stabilization. DCIS without surgery may show stagnation, regression or progression, depending on the changes in systemic hormonal equilibrium and in the local defense in the breast. After lumpectomy, the possibilities are similar. There is no sense of frequent monitoring, as the prevention of recurrence is in our hand: restoration and maintenance of hormonal equilibrium. Upregulation of estrogen signaling (Premarin treatment), improvement of hyperglycemia (Metformin), strengthening thyroxine synthesis (iodine and selenium) and vitamin D supplementation are the most important measures. Controlling the hormonal equilibrium (once in a year) is important. Cave tamoxifen! It is a double edged sword, as if the patient has no capacity for strong compensatory upregulation of estrogen signaling, the blockade of receptors will result in toxic symptoms and tumor growth.

      • Rebecca says:

        I had stage 0 DCIS with lumpectomy, clear margins after 2 reexcisions, and 6 weeks of radiation. Should I be taking vitamin D and iodine now? I’m not taking Tamoxifen. I’m just wondering what more I can do to help prevent reoccurrance other than other changes I’ve made. Thanks.

      • Lumpectomy was adequate. DCIS recurrence depends on the systemic and in-breast anticancer mechanisms of your body. The primary treatment is estrogen (instead of tamoxifen) so as to upregulate estrogen signaling. Control of estrogen signaling is obligatory in your whole life. Sorry, radiation was disadvantageous, since extirpated the immunologically and hormonally defensive cells in the breast. Vitamin D supplementation is important, and you need laboratory control as both hypo- and hypervitaminism are harmful. You need iodine and selenium for thyroid gland stimulation if your thyroid stimulatory hormone (TSH) is increased. Physical activity is important, as muscles may synthesize both estrogen and DNA-defensive mediators.

      • Robin Auerbach says:

        How much vitamin D is recommended?

      • Karen says:

        I recommend first getting vit d level. I was low last year but started taking it every day I take 3000u /day now my level is 49

        Sent from my iPhone

        >

      • Dose of vitamin D depends on your serum concentration. When your vitamin D level is within the normal range, 1000 IU vit D3 Fresenius/day is an appropriate dose. In the summer, it depends on the time staying on sunshine. Serum control is important once in a year, increased vit. D concentration is also harmful.

      • Robin auerbach says:

        Thank you!!

      • Ellen Berman says:

        Ms. Suba, I have read with interest your post about iodine and selenium in possibly reducing tumors in DCIS. My understanding is that these studies may only apply to estrogen-responsive DCIS. My DCIS is estrogen-negative so would there be any use for me to take the iodine + selenium? Thanks for your response.

      • Do not be anxious! DCIS and breast cancers in any stages are curable, even if they are estrogen receptor (ER) negative. The primary therapy is the restoration of estrogen signaling. The lower the ER positivity of DCIS, the higher is the therapeutic dose of natural estrogen (Premarin). Estrogen is a very important, unique hormone, there is no over dosage, the dose limit is the starry sky. Other hormones have narrow range of physiologic concentrations. When your thyroid stimulatory hormone (TSH) is elevated, it means hypothyroidism, which is a cancer promoting factor. In this case, you need iodine and selenium supplementation, irrespective of the ER status of your DCIS. I recommend one of my papers, if it is difficult, please; consult it with your doctor!
        Triple-negative breast cancer risk in women is defined by the defect of estrogen signaling
        http://www.ncbi.nlm.nih.gov › NCBI › Literature › PubMed Central (PMC)

  62. Kimberly says:

    Ok I read your story like you suggested. So the end of your story was scheduling a rodeo mri. What happen then? Another surgery? Just left the residual dcis? And if so ,no increase in size ? Do you believe dcis is cancer? That seems to be a much debated question. If it’s called ductlal carcinoma in situ then it is cancer right? Hence the word carcinoma in the title. Right or wrong? Curious what your opion is on that. Thanks

    • dp4peace says:

      Hi Kimberly,
      No I do not believe DCIS is “Cancer” and I believe as Dr. Esserman states — the term “Carcinoma” should be removed from the diagnosis. Read everything that Dr. Esserman and Dr. Hwang have to say on the topic (and many others). There are so many articles published now about this language issue and OVER-TREATMENT of DCIS.. See this post and you can hear my interview on KPBS / NPR: https://dcis411.com/2015/11/22/dcis-over-treatment-makes-mainstream-news-2015-highlights/ You can read all my blog posts under “blog” which is my continuing journey…..I have done NO FURTHER CONVENTIONAL treatments. I left a CLOSE margin (not residual DCIS) after a re-excision (which was my 3rd surgery in 2 years). All the surgeries were exploratory as the imaging was inconclusive and rated the highest level of SCARE “highly suspicious of MALIGNANCY. At that time, I felt I had no choice but to remove the tissue to see if in fact it was MALIGNANT. It was not. It was all LOW GRADE DCIS. 5cm of tissue was removed in total and my breast was quite deformed….but amazingly it healed nicely and my breast tissue grew back! I have done dedicated breast MRI annually as well as ultrasound and thremograms — all have been CLEAR. I have not had a mammogram since the last surgery in 2011 and i do not plan on ever having another mammogram — this test is what started all the unnecessary fear and biopsies and surgeries! Plus I discovered that i have dense breast tissue so the test is highly inaccurate and can miss INVASIVE cancer.
      I highly recommend a 2nd pathology opinion and consultation with Dr. Lagios. Then I would get the Oncotype DX test and also go to a Dr. that does not push, pressure, intimidate or scare.

      Keep the questions coming!🙂 Donna

  63. Robin says:

    Hi. I had a lumpectomy for 3 mm dcis. At my 6 month follow up mammo they saw a few scattered calcifications. Radiologist was not concerned but wants a follow up mammo in 6 months. I think the scattered ones they see now we’re there before. Not removed. Anyone else have this happen??

    • I don’t have DCIS, but I have had scattered calcification for 8 years. I only do a mammo yearly as opposed to the recommended 6 months, along with a MRI, because that is too much. The key is to eat clean, exercise, show gratitude and have low stress.

    • Clare says:

      Hi Robin, do you know what the grade the DCIS was?

      • Robin says:

        Low grade, 3 mm. In fact one original report said it was just adh borderline dcis.

      • Clare says:

        Then my advice would be to let them do nothing else – and maybe think about thermal imaging rather than mammograms. Two years ago they found high grade DCIS almost covering my whole breast and a tiny cancerous area 2mm so I proceeded with a mastectomy but refused any adjuvant treatments. There is a lot of research ( especially in US) that states that DCIS low grade may never become cancerous. Look at your lifestyle and diet going forward ( cut out dairy and refined sugar). Good luck 😊

      • Robin says:

        Thank you!! I will look into that!

  64. Gretel Bardin says:

    I was diagnosed with DCIS Grade 3 with necrosis and ER/PR-….MD Anderson made me wait 2 weeks to make sure all slides were read….they NEVER sent for slides until I investigated. I have to wait another week, is this putting me in jeopardy of it turning into IDC? Gretel

    • Wendy says:

      Hi Gretel,

      I don’t think a week will make a big difference. I was diagnosed with intermediate ER/PR DCIS 2 years ago and there was no change in my DCIS as of my last MRI (6 months ago). Please keep in mind that DCIS is a risk factor for invasive cancer. Having a DCIS diagnosis does not mean you will in get invasive breast cancer. Take the time you need to educate yourself and don’t be bullied into treatments if you are not ready.

      Blessings,

      Wendy

      • Robin Auerbach says:

        Hi. I was dx with 3 mm dcis low grade 6 months ago. Had lumpectomy. Low oncotype score. No radiation but I’m on tamoxifen. What scares me is when I read about women who are dx with dcis then have masectomy and they find invasive which did not show up on any test. I’m in a dcis support group online and have read this happening several times.

      • dp4peace says:

        Hi Robin, I remember reading those posts early on. This is very troubling and scary to hear….but this would also mean that every women needs to have a mastectomy just in case they are one of those rare cases. There are recent studies showing that there is NO SURVIVAL difference in treatment of DCIS. Yours is small low grade and low risk oncotype. Your best bet in my opinion is to get an annual dedicated breast MRI which has been shown to be best at detecting high grade DCIS or invasive cancer. See post here: https://dcisredefined.org/choices/imaging-and-monitoring/rodeo-mri/

        Worrying about invasive cancer that was missed is no way to live. You have to be at peace with somewhat of the unknown and just live your best, healthiest life and try to reduce risk and monitor in the most natural/least harmful way. That’s what I do!🙂 Donna

      • Robin Auerbach says:

        Thanks Donna!!

      • Robin Auerbach says:

        Thanks Donna!!🙂

  65. Carol Jessie says:

    Maybe they should tell doctors. They try to intimidate people. My ultrasound was clean. And the radiologist came and did another one his self and that was clean. Then he proceeded to intimidate and told me the boipsy needed to be done asap bit the girl in scheduling told him that they did not have anything for a couple of weeks then told her was an emergency. The the mamgrams recognition walked into my room they got her to walk me out of the hospital. I said then something is wrong. Since then I have seen several ladies I know but not well enough having breat cancer treatment. Too many in my local area. Greedy

    • dp4peace says:

      This is why we have women’s intuition — and we must follow it! Thanks for sharing your thoughts Carol. It helps others who also may have a similar experience. So much about the current system is just plain wrong. The more of us that use our voices and share our stories, the sooner it will stop!🙂 Donna

  66. Ildiko B says:

    Thank you for your decission making a way for me and many others to follow. I was diagnosed with grade 1 tubular invasive carcinoma slow (indolent) growing 6mm. After biopsy which took 4.9mm i was then given the info that an operation would take care of it..meaning a golfball size would be taken out and with it a lymph node just to check…my shock and emotional state you can imagine…A friend introduced me to Salvestrol an organic product. I did research on it and started to take it.That was two weeks ago. The trauma and mental challenges are just now winding down… I will let you know my outcome…but “mathematically speaking” the 1.1mm of left over cancer in my breast should not be there in two months time when i would do a check up as Salvestrol has been proven (not clinically but with case studies cancer grade 3 and more) to kill cancer cells but leave good ones alone.

  67. Denise Gallop says:

    So glad to have found this site!!!

  68. mariam843 says:

    I was diagnosed with breast cancer and i lived with that diagnosis for more than 3 years, spending all I have and losing my self in the process, its what I wouldn’t want to see any person go through, Luckily i had an encounter with Dr Jose, a renowned Italian doctor that helped me overcome my cancer in less than two and a half months, just with the use of herbal medicine and spiritual help, i can now boldly say I am cancer free and a proud living testimony,he is known to be able to tackle any type of cancer found in the human body, God forbids any one should suffer here on earth, thats why I believe he created all these herbs, if you also want to clear your doubts and fight cancer to the barest minimum, take the bull by the horn and avoid death, you can contact my Doctor, by his email joseherbals28@gmail.com

    • Official therapy even today is the aggressive killing of tumor cells by radiation or chemotherapy, although they are dangerous for both the defensive mechanisms and life of patients. Cancer cells are not exogenous enemies like infective agents, but rather human cells embarrassed by the defect of their highest nuclear genome stabilizer machinery. Cancer cells may be domesticated by the upregulation of estrogen signaling. Recent Pat Anticancer Drug Discov. 2016;11(3):254-66.
      Causal Therapy of Breast Cancer Irrelevant of Age, Tumor Stage and ER-Status: Stimulation of Estrogen Signaling Coupled With Breast Conserving Surgery.
      Suba Z1.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s