Welcome to DCIS 411.
My name is Donna Pinto. In January 2010, I was completely blindsided and shocked when I was told I had DCIS, also known as “stage zero” breast cancer.
I was 44 — a healthy, happy, fit mom of two young children — with no signs or symptoms of anything wrong. I could not believe the alarming “cancer” treatments I was told were the standard protocol for treating women with a low-risk, non-invasive, “pre-cancerous” condition.
Thankfully I began researching and soon felt reassured by a handful of outspoken breast cancer experts, science-based studies, resources and support for a less rushed and less aggressive approach to DCIS. Sadly these voices of great wisdom were not being heard. The information was often overshadowed by mainstream media hype and a culture of fear around breast cancer, despite conclusive evidence of massive “overdiagnosis” and “overtreatment.”
Watch Inside Edition video featuring my story: ‘Stage Zero Breast Cancer’ Patient Believes She Was Over-Treated:
Following a DCIS diagnosis in 2010, I experienced an incredible life transformation. I went from being frightened, confused and anxious to feeling calm, empowered and inspired. I became an avid researcher, blogger, Certified Nutritionist, and advocate for informed decision-making and pro-active holistic wellness practices. I felt compelled to share the wisdom I discovered and a new way forward for women to be empowered in their journeys to health, wellness and peace of mind.
I created DCIS 411 to help women world-wide receive the same information and resources I was emboldened by as well as to provide a space for emotional support and connection that I felt was missing in online DCIS support groups and forums.
“DCIS is NOT Cancer” — Breast Cancer Experts Speak Out:
- “DCIS is not cancer. It is a risk factor for cancer.” — Dr. Laura Esserman,When Cancer is NOT Cancer, The California Sunday Magazine, 2014
- Somehow DCIS ended up in the cancer camp rather than the risk-factor camp, and all my work is to push it back.” — Dr. Shelley Hwang, The Danger of DCIS, The Breast “Cancer” That’s Often Not, Elle Magazine, 2015
- “DCIS is a marker for breast cancer risk; it itself is not cancer. Removing the speedometer does not change the speed of the car, so removing DCIS, irradiating it, or giving it pills will not change the risk of dying.” – Dr. Jennifer Marti, Ductal Carcinoma In Situ: The Weight of the Word “Cancer” , AACR, October 12, 2022
- “DCIS — “In and of Itself is not a ‘cancer’ lesion.” – Hal Burstein, M.D., Ph.D., clip from Peter Attia, MD Podcast 278 ‒ Breast cancer: how to catch, treat, and survive breast cancer, Nov. 6, 2023
My “Health Enlightenment” Journey and Update — October 2023
“Holy Hallelujah” — Listen to my conversation with Dr. Jenn Simmons, Breast Surgeon of 17 years turned Functional Medicine Doctor:
It is my sincere wish that all women diagnosed with DCIS and their families take a time-out to ask important questions and create an individualized holistic plan of action.
Disclaimer: I am not a medical doctor and I do not give medical advice. I am a woman who cares about women, especially those diagnosed with DCIS. I have spent countless hours over 14+ years researching DCIS over-diagnosis and over-treatment. Please think of me as your friend and mentor.
DCIS 411 is a website which is vastly different than any other resource for DCIS which often refer to DCIS as an “early form of breast cancer” and explain “standard-of-care” aggressive “cancer” treatments.
How is DCIS 411 Different?
This site focuses on research and the mindset that “DCIS is not cancer.” It delves into and amplifies the science and experts discussing overdiagnosis — often described as an “unintended consequence” of routine breast cancer screening among healthy women.
To me, this is a public service website.
I have intentionally not monetized this site. I believe all people worldwide deserve to have easy access to health information free from bias and conflicts of interest.
Think of DCIS 411 as a FREE Step-by-Step GUIDE…
Step #1
Take your time
DCIS is not an emergency. Get all the specific facts about your individual and unique case. Follow steps below and make decisions without fear.
Step #2
Ask yourself important questions
- Is your gut telling you something is not right with the “standard of care” one-size-fits-all treatments for DCIS?
- Are you looking for support and resources for a less aggressive, more holistic approach to cancer risk reduction?
Step #3
Gather information about YOUR pathology and Get 2nd Opinions!
- See FAQ page.
Step #4
Understand DCIS Overdiagnosis and Overtreatment
- Please see Overdiagnosis 411 here.
-
Read: The growing case for doing less: How harmless cancers are being overdiagnosed in America FORTUNE, October 2, 2023
- Watch video:
Step #5
Learn from Donna’s Story + Research
Read my 2023 “Never Cancer” Update:
In 2011, My Doctor Told Me: “Your Breast is Like Spoiled Soup… It’s Not Worth Saving.”
- Watch video below (2009 – 2016):
Step #6
Review Donna’s Past Blog Posts + Pages
- Click on Blog and read the continuation of “Donna’s Journey” (scroll backwards)
- Review Donna’s Holistic Health approach
- See Media page for interviews featuring Donna’s story and relevant articles
- Read: Evaluating DCIS treatments — do you know your “survival” statistics?
- Use the “Search” box for specific topics
Step #7
Join Online Support Groups
- DCIS – Diet, Lifestyle + Safe Imaging
- Proactive Breast Health Club (DCIS Redefined)
- DCIS – Is Not Breast Cancer!
- DCIS Over-diagnosis and Over-treatment
- Donna’s Choice: Global Healing From the Inside Out
Listen to Donna and Nancy discuss “Why we said NO to Overtreatment:
Step #8
Stay Connected
- “Follow” DCIS 411 and receive an email alert with new posts
- “Like” DCIS 411 Facebook page
- “Follow” @dcis411 on Twitter
Step #9
Read Donna’s 1st post — December 2011…
Why DCIS 411?
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 Health 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.
Excerpted from: Take Carcinoma Out of DCIS and Ease Off Treatment
***********************************************************************************
FUN FACT about me:
For most of my life, I have been a seeker of truth and wisdom.
In 1994, my first book — Cheatnotes on Life: Lessons from the Classroom of Life — sold over 60,000 copies.
This website, DCIS 411, created in 2011, is my version of Cheatnotes on DCIS.
Follow this blog to stay updated on my book-in-progress and publication date.
I look forward to connecting with you and sharing insights. ~ Donna
DCIS 411 
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.
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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.
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I have carcinoma dcis invasive stage 2 through out my whole left breast and I figured after doing catscan stereotactic biopsey might as well get then both removed and they will check my left lymphomas when he removes them
( which I am freaking out) next month July 6th. I am running out of time. I dontknow what to do but I feel like I am just frightened about all this because I damn sure say I could care less about reconstruction but it makes me sad to get them my books removed. I found you through chrisbeatcancer.com…into holistic stuff and listening to my gut…I feel something else needs to happen…time is running out for me ..July 6th is around the corner…omg…
Help me surviors and smart woken ones…
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So sorry. This website is really for noninvasive Low-risk DCIS. I would recommend reading Radical Remission and joining an alternative BC group. Blessings to you
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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.
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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.
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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
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Mutilating surgery, chemotherapy and radiation are all harmful measures against breast cancer and against all other types of cancers. Please, read this publication: 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.
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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!
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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
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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
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Hi, please research how iodine and selenium [brazil nuts] will help with fibrocystic breast condition. My daughter used to have that dis-ease/condition as well, so I care.
These links may help as well:
https://www.healthandscience.eu/index.php?option=com_content&view=article&id=1007:…
https://searchworks.standford.edu/view/10786960 [my daughter’s friend bought her this book for her 50th birthday! 💚]
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4519921/
https://www.ncbi.nlm.nih.gov/pubmed/27609747
You get the idea – stay healthy!
💚 Millie
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Can I consider mild naturesl. Hormone therapy??? And supplement by my alternative natural care dr
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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
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could someone explain “margins” to me?
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Facebook link is in “Resources”:
Online Support:
Donna’s Facebook Group: “Donna’s Choice: Global Healing from the Inside Out.” https://www.facebook.com/groups/373056561416/
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Here is a good link about negative margins:
http://www.cancernetwork.com/breast-cancer/content/article/10165/2050918
“the width of surgical margins in breast cancer is not well defined, with some hospitals defining a clear margin as anywhere from 1 mm to 2 mm. Only a small proportion of surgeons typically believe that a 10 mm negative margin is the minimum”
Margins were considered positive when DCIS touched or was transected at an inked margin.
A “close” margin would mean the DCIS/abnormal cells are surrounded by less than 1-3mm of healthy tissue (depending on who is evaluating the margin status)
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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.
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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.
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If it’s more than 1 number then it means it’s high ?
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The USC/VNPI assigns DCIS patients scores (4-12) based on tumor size, margin width, grade, age, and comedo necrosis. There is a chart with recommended treatments based on the # given between 4-12: see chart here: https://dcisredefined.org/dilemmas/assessing-risk/van-nuys-prognostic-index/
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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
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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
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Hello folks, I do not know how to post on this site anymore, but was just at the docs because two small cyst like bumps in my armpit that just came up in the last week….she recommended ultrasound, tomorrow a.m., and because i had so much history following this blog in the past, i thought to ask advice on how to handle the ultrasound results if they recommend a biopsy, whether it be needle or surgical??? thanks so much!
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Hi! You can always get a 2nd opinion on the ultrasound from Dr. Krishnan. Link is on FAQ page 🧡Donna
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Thank you so very much Donna!
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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
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meant oncotype DX……….
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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
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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
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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
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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
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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.
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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.
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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?
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Hi Tafida,
I am new to blogging and cancer. I am going for a second option. Invasive Ductal carcinoma. I have had all the test I can take. My Onotype is 41. I have clear nodes all 4. clear margins. 1.o tumor. All standard of treatment is being offered. This is difficult.
I am reading and researching all the time. I am 58 on Feb 3. very healthy, now, but if I take this treatment I feel I will not be as healthy as i am now. I swim, lift weights go for walks and eat clean. I go to Dr. on Wed. for that second option. I hope I can help other when I put this all together. Stage 1 I thought is cancer if it is call invasive.
Be well, and we will keep learning. I hope I don’t make the wrong decision.
You are not alone, keep going.
Bern
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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/
Click to access 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
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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.
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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.
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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.
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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.
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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
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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.
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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
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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.
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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
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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
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Hi Jet…anyway I can email you privately? DCIS grade 3, BRAC + . scheduled for surgery next week, just have a few questions.
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Help ! Dcis 3, check my good breast ,and found more classificans, Going crazy
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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,
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Not sure of what they will find in the other breast yet an biop on tues.
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yes I do have Dcis 3 in right breast. ,now possible in left. Please tell me your storyb
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The beginning of my story is right above your comments.
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I have same DCIS- don’t know what to do- should I just have both breast took off. Hard decision!!
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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
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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
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I will also have reconstruction durning surgery
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I am having a mastectomy on Oct 15th soo upset. The left breast ok!
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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
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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
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Hello Michelle,
Just checking to see if you had your surgery and all went well.
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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.
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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.
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Michelle,
Just checking to see how your surgery went hope you are doing well. Thinking of you
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I am doing great ! I am back at work again , feeling almost like myself again finally, thanks for all your words of encouragement
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Have you seen this latest study?
http://mobile.nytimes.com/2014/02/12/health/study-adds-new-doubts-about-value-of-mammograms.html?_r=0&referrer=
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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.
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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
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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
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Prayers for clear margins and much peace, light and love to you Judy.
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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
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Wonderful news Judy!! Thanks so much for sharing!! Keep us posted! 🙂 Donna
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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
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hello again, as i read on, i called the # for Dr Lagios as i am having the initial ultrasound in the a.m. tomorrow and his # is disconnected….might you have a current #?
thanks so much!
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Dr. Lagios retired. I replied about 2nd opinion from Dr. Krishnan —link on FAQ page
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Hi Judy. I hope you are well.
I just came across your blog tonight and would be interested to know how you got on using natural healing as I am a natural gal too and am struggling with how to handle a recent BC diagnosis. Susan
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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
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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
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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
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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
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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
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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
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Donna – Do you buy Ezekiel bread from the store or make your own? If you have a good recipe I would love to get it from you. I have my own grinder and I have tried several recipes I found online and none are very good compared to one brand I tried sample of at the organic store, which is way too expensive if I can make my own. Thanks for all the wonderful information you share!
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This is one food I do buy from the store. Here is a good article about breads.http://foodbabe.com/2014/02/24/healthiest-bread-on-the-market/ Hope that helps! 🙂 Donna
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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
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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
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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
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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.
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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
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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!!
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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
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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.”
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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
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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.
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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.
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Email me AskMistressSusan@gmail because I have a few questions for you.
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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?
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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.
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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.
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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.
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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!
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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!
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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!
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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).
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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!
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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!
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Thanks for the info informed consent! I will post it under resources.
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Hi informedconsent2014, I am exactly in your same situation. Haven’t gotten the biopsy yet and am seeking a second opinion on whether it is OK to delay that or not. Your story was very helpful to me. Can you post an update as to what your status is now?
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Hi Connie,,
To update my status, as of today Feb. 2021, I have not had a biopsy. I have continued to have yearly mammograms to monitor the microcalcs. The 2019 mammogram was downgraded to “probably benign”. I was overjoyed to see that! I have been monitoring this since 2011 with only minor changes seen on the calcs. In 2020, the radiologist (apparently) saw some very minor change and re-categorized it once again as BIRAD4, biopsy recommended. I was very unhappy to see that, but after dealing with this for over a decade, with few if any changes seen, I am not stressing about it. My next mammogram is scheduled for March (next month), so we will see what that shows and I will update here.
I think the radiologist in 2019 felt that after such a long time of watching this abnormality, with few to no changes, he was confident in saying it was likely benign. I don’t know precisely why the 2020 radiologist felt so compelled to re-categorize it again. Maybe pressure to do so? Who knows? There was no precise description given of exactly how the calcs had changed, either in number or appearance. Just a vague remark, and it is that type of vague stuff I have dealt with all along. And also why I have refused biopsy as an invasive and probably unnecessary intervention in my case..
You ask about a second opinion re: getting a biopsy. Unfortunately, I think even Laura Esserman at USC will recommend a biopsy because even the most enlightened surgeons are still going to “cover their rear end” and aren’t quite ready to tell patients to skip the biopsy. I’ve had to really buck the system on that issue, but I’ve stuck to the logic and facts and refused to submit to an intervention based on flimsy evidence of changes in the microcalcs.
All I can suggest to you is that you try to contact Laura Esserman at USC (depending on where you live or your insurance), and see what she thinks. Maybe she can read your mammogram remotely online and give you her impressions of what she thinks. Otherwise, it will probably have to be your own decision to watch the calcs and follow up yearly and monitor them. All I can say is that, in my case, after now going on 11 years, I am still alive and well! Few if any changes at all in the calcs. That doesn’t mean it will always be that way, but at least I have proved that monitoring is a safe option. My own doctor (my regular internist) has been quite humbled by the experience and I think now realizes that women are being pushed into UNnecessary procedures which are painful, costly, and based not on science but hysteria. I would never recommend against a biopsy if a lump is found, but for microcalcs, esp, a small grouping, I think it’s high time to change the knee jerk reaction to have a biopsy. Good luck and let us know what you decide and how it goes!
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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
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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
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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
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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.
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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
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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!
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Thanks for the prompt response Judy! Knowledge is power. :o)
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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!!!
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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
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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.
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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!
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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.
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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
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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.
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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
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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!
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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.”
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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!
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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.
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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
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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!
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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
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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!
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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.
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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
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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!
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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
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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!
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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.
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Sandra, I don’t know if it will or not, but you might want to read about Julia Chiappetta who had Stage II Infiltrating Ductal Carcinoma 15 years ago. She opted for a lumpectomy and refused chemo, radiation and Tamoxifen. I haven’t seen this video, but I have read about her story on other sites. https://www.facebook.com/chrisbeatcancer/posts/701202733256507
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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
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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.
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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.
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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…..
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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
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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?
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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!
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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
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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
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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
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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
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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.
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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
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Please add me to emails
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Hi Priscilla, Please make sure you click “follow” and you will receive an email with each new post. Thanks for your interest! 🙂 Donna
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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.
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Thank you!
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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.
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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
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I was going to Kaiser in San Marcos, CA. I will monitor it every 6 mos with a mammogram. Thanks.
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I was going to Kaiser in San Marcos, CA. I plan to monitor with mammogram in 6 mos.
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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.
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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
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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
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Karen, don’t forget to do the following if you are not already doing them: Eat Ginger, Dark Chocolate, Vit D (if your level is not optimized), and Ubiquinol; Ditch the Microwave; and Only put Organic items in and on your body. http://www.drweilblog.com/home/2012/7/25/anti-inflammatories-ginger-and-turmeric-video.html
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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
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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!
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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
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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!
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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.
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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
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I was just diagnosed with dcis. So nice to hear good news!
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Holly, was your dcis grade 1,2, or 3?
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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
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Hi. I just have stage 0 DCIS and try to eat good hardly any sugars went to a holistic dr really liked her
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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.
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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!
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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?
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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
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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.
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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
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Carol, are you saying that you still have microcalcification 3 years later, so they want to do a biopsy?
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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.
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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.
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Hi. So you have adh? Are you just doing 6 month checks?
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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.
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Good for you! I was just diagnosed with adh and one tiny spot that is borderline Adh dcis.
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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.
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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.
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I’m 47, and that is completely ridiculous. My motto is: I’m not going to bankroll a doctor’s lifestyle.
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Exactly!! Thank you for your story and I wish you good health!!
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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
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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?
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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
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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.
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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.
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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
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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
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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
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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?
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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.
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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.
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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.
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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.
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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!
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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.
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Hi Zsuzsanna,
Thank you so much for responding. I will checkout the references you provided.
Wendy
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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
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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.
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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.
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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.
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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.
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How much vitamin D is recommended?
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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
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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.
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Thank you!!
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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.
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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)
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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
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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
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Please listen to the KPBS radio interview here:
http://www.kpbs.org/news/2015/aug/24/are-some-cancers-treated-too-aggressively/
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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??
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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.
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Hi Robin, do you know what the grade the DCIS was?
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Low grade, 3 mm. In fact one original report said it was just adh borderline dcis.
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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 😊
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Thank you!! I will look into that!
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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
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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
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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.
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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
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Thanks Donna!!
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Thanks Donna!! 🙂
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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
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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
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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.
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So glad to have found this site!!!
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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
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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.
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I’ve just encountered a rather unusual thing that I want to throw out here for comment. To update, I’m the person who has had microcalcs since 2011 and have refused biopsy since that time, opting instead to surveil it on mammogram. My doctor has continually pressured me to get the biopsy for these calcs, because I am very aware that it can lead to a roller coaster of treatments and surgeries that are questionable in many situations.
Anyway, I get regular lab work every year for the usual bloodwork, and I noted on this particular lab work, my doctor had ordered a PSA test! Welllllllllllllll, how strange. So, I did some research online to determine just exactly why he has done this. As we know, PSA testing is done primarily on men to test their PSA levels for potential prostate cancer. However, Ir an across one or two medical articles talking about PSA testing in women who have breast cancer. So, obviously my doctor is trying to find something to continue to pressure me (or scare me) into getting a biopsy. The references I saw to PSA testing in women was for women who have more advanced cancers and they use PSA just to monitor the progression of an existing advanced cancer, not as a routine screening tool. We also know that PSA in men is very controversial, as a high PSA can mean many things, not just cancer.
I just wanted to put this out there to you all, to find out if anyone else has encountered a doctor who did a PSA test on them, and to show you all again that the medical profession never gives up in trying to bully, scare, or push us into treatments or surgeries. I think my doctor has viewed this as somewhat of an ego buster for him, that I have now gone 5 years without a biopsy, with minimal change of these calcs, which is frustrating to him and he wants to make me dance to his tune.
I will let you know what the results of this PSA test is when I get it!
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Please, do not take this as insult. May I ask why you continue with this doctor if he continues to pressure you to do something you feel very strongly against, and when you and he are not on the same page with your treatment? You clearly do not trust this doctor and that too is critical in your medical situation. You are well informed and I am wondering why you are not with a doctor who shares your views and knows the research you know.
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Your question isn’t an insult at all, and is very valid to ask. I stay with him because he’s fairly nearby and driving is hard for me due to other health problems. Also, even though he hasn’t been the most supportive, he’s probably not the worst either. At various times, he’s said that he feels I am a very well informed patient and I think he knows I’m smart and do my homework. So, I guess my feeling about him is: he’s probably not too much worse than the vast majority of docs out there when dealing with a controversy like this, and the next doc I go to may be even worse. Also, and this is a BIG thing, he’s on my HMO insurance, and I don’t have a lot of choice in who I go to. I am on a budget, and my insurance is what it is. The other docs on the list were either too far away or other problems with them. So, like all patients, I have to compromise and deal with what’s available to me. I wish I could go to anyone, anywhere I want, but that’s unfortunately not the case.
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Thank you for explaining. I assume patientzeroblog and informedconsent2014 are the same person? Anyway, I wondered if your insurance played a big role in your choices. If you can really call it a choice if a person is limited to whatever list an insurance company lays out for you. My mother was diagnosed with breast cancer a few years ago, at the same time my young daughter was diagnosed with stage 4 non Hodgkin’s Lymphoma. In both cases, we each had very good medical coverage (different providers) but were limited to “the list” of providers in order to get full coverage from the insurance. Going outside the list I think it would have been like 80% we would have to pay out of pocket. Anyway, my family doctor was able to refer my daughter to Mayo. Since he referred her, the insurance company accepted that and paid the full policy amount. My mother did the same thing with her doctor and was also referred to Mayo and her insurance fully covered as well. So there may be something to this for others as well, is why I am telling you this and wanted to know if insurance was hindering your choices.
Of course you did say too that distance and travel was a concern so may not help anyway. But that is another thing that we found help for through Mayo and other resources/contacts. Gas and lodging cards (free or big discounts) are available, as well as meal discounts and freebies. There was help for everything we needed. There is also much help through many churches and Christian organizations. One such org is called Love Inc. (Love In The Name Of Christ). If you call your local church don’t stop at just one, call them all – not all have the same info/contacts or able to help so keep calling around. And you don’t have to stick to just your area. Mayo is out of state for us so I called in both states.
There is also help and or lists of organizations who can help available by calling the American Cancer Society and also your specific cancer type org (American Lymphoma Society or (your state name) Lymphoma Society etc.). And a very good resource is the cancer unit social workers at any hospital anywhere. I just called around to different hospitals around the country (the best known hospitals for cancer treatment as well as my local cancer treatment hospitals) that treat cancer and asked to speak with the cancer unit social worker. You don’t have to be a patient to do this or to get this info from them. They are very happy to help by giving whatever info and contacts they have available to them.
Another form of help is if you are not able to drive yourself long distance (or even across town) to treatment, there are volunteers to help you in most areas/communities, and some hospitals provide the service free of charge. There is also a flight program, private pilots around the nation team up to donate their time, their private plane, the gas and all expenses to fly you to/from the city/state of treatment. And there are orgs that pay for your travel and or treatment out of the country for “non-conventional” treatment. Some of these programs have certain eligibility requirements and some do not. But help is available to broaden your choices for treatment in most areas if wanted/needed.
It can be a very daunting task to look into these many possible options so is very helpful to get help from someone to make some of the calls for you too if you can. I have written all this out so it is hopefully read by even just one who is looking for more choices than they are currently given or feeling confined to only those choices because of other circumstance. I have not looked on this site to see if there are listings of contacts such as those I have mentioned for helping patients financially and every other way, but if not, there should be on every site like this one. Blessings and Peace to you and all here.
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More than appreciated your post . For 11 months now I have refused a biopsy for calciffications- much research- many arguments with doctor who tried to bully me into biopsy. He actually told the radiologist to schedule a biopsy BEFORE he even spoke to me – NO consent. I am refusing this and all future mammograms as a redt of all research- Google Prof. Michael Baum and find out the truth.
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Yes, I had a blog for awhile documenting some of the issues I experienced during this whole biopsy/DCIS situation I’ve been dealing with since 2011. For some reason, wordpress lsometimes logs me in with that instead of my main screen name here of informedconsent2014. . Thanks so much for taking the time to write out all the various options with insurance, transportation and other help that might be of assistance to those of us who struggle with making complex decisions. I will certainly keep it in mind. My HMO does have a van (six round trips paid for) in the city I live in, which I have utilized for other things, so that’s a help. I am so glad that your mom and daughter were able to get the care they received at Mayo. Hopefully someday these issues with DCIS and breast cancer in general will no longer be so confusing and controversial! I have been dealing with it since 2011, as I know most of us here have been on long, frustrating journeys in one way or another with it! Thanks again for your help and advice!
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HI my name is Maria. I love what I am reading here! Here is my story!
-June 8, 2016 Screen Mammo
-July 15, 2016 Biospy Results Stage 0 DCIS Left Breast
Intermediate & High Grade 9cm ER+ PR+.
-January 2017 Maybe calcifications increased a bit (appt on January 17, 2017)
-Recommended Treatment (even from Dr. Lagios) Lumpectomy with Radiation and Tamoxifen or Mastectomy
For six months I resisted any treatment and tried to eat healthy. Weekly Acupuncture and Supplements. Endocrine/Functional Nutritionist (not a cancer program) (online-based program I paid for three nutritionist talks in six months)
Guess what? I’m not so good at eating healthy. Wake Up Call #1: DCIS ; Wake Up Call #2: I’m not so good at taking care of myself.
I haven’t met an oncologist I like at all. On DCIS Redefined and through Shelly Hwang – Dr. Sheldon Feldman (in NYC) was recommended to me- I found his demeanor arrogant and distasteful. After six months though he might be the only one to see me through this as he is supposedly an “Alternative Doctor”. I’m seeing him again tomorrow Tuesday January 17th.
I have NOT poured my heart and soul into this. BUT I WANT TO NOW! It’s almost like I was just diagnosed!!?
DOCTOR’S REASON FOR SURGERY & RADS & TAMOX
There is a 10-15% chance that I can already have invasive cancer and they only way they can be certain is to test all the tissue with margins to be sure. Also there is a chance the DCIS Calcifications increased – I’ll know more from Feldman – Surgical Oncologist on Tuesday (tomorrow).
Issue: I’m still not convinced that I need surgery.
Question: Do I still have time? Can I NOW REALLY TRY alternative treatments?? I’m about 40 pounds overweight (still), have pre-diabetes and many fibroids ( avoided surgery).
What do you use to measure your DCIS? I’ve heard mammograms aren’t so good and can cause cancer. What about SonoCine’ Sonograms or that RODEO MRI?
Thanks,
Maria in NYC
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High grade is treated differently from low-to-intermediate grade. I found this out after my visit with Dr. Shelley Hwang, who recommended a mastectomy for me (although she hadn’t seen all of my slides yet.) But it’s also a matter of how large the high-grade area is in relation to the total size of your breast, so if you choose lumpectomy, you want it to be acceptable to do so cosmetically. Mine wasn’t +PR or +ER so my treatment recommendation may be different from yours. But I DO recommend that you get at least three opinions before you settle on a treatment; it took me more than that to finally find an Atlanta-based surgeon who was completely okay with just removing a piece surgically to ascertain for sure the extent of my DCIS, because apparently it’s not always a 100% sure thing. My biopsy came back benign! Doctors recommend mastectomy as a “just in case” maneuver quite often, and because they are liable if you do get a worse cancer. And to my knowledge, while calcifications are sometimes suspicious, they may be misdiagnosed as DCIS. Many women have calks and it’s important to keep an eye on them. Hope this helps!
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I had high grade DCIS. I was lucky that at the time I lived in Southern California. I went to Dr. Silverstein who did a procedure called oncoplasty. My calcifications were in a line and covered a large area, however, he was able to get it all. This procedure was a lift and a reduction on both sides and then they took the tissue from the good side and replaced what they took on the other side with my own tissue. I am now a B instead of a C but look good!
I did do the Radiation but not the tamoxifen. I don’t know if it was really necessary but every Dr. that I saw which was about 5 said I needed it. I also did not like any oncologists.
I found an excellent Dr. named Dr. Kristine Reese in San Diego who is a naturopath and started working with her.
It has been 3 years and I feel great. She is my main Dr. I have to have an OB GYN in case I need to have an MRI. I do a thermascan and ultrasound once a year. Dr. Reese checks my blood every three months, so far so good! I have worked to improve my immune system with her.
I now live in Florida but do phone appointments with her and try to see her in person at least once a year. This year is the first time that I am going to have the Sonocine.
Good luck with what ever you decide is best for you!
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I read your article may I ask what blood test do u have dr do?
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Once a year I have a test called Singulex which tests everything. The other times she orders a regular blood test and still tests a lot of other things but checks the cancer markers as well.
Mine have been great all along. I am getting ready for my yearly screening this month.
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This singulex test who orders it your oncologist?
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I don’t work with an oncologist, I work with a Naturopath. This test is a very expensive test, if you have good insurance it is covered. I don’t know if regular dr.’s use it.
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I’ll check. Can it tell u if you have invasive breast cancer? I have stage 0 low grade DCIS only monitoring only had biopsy
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I don’t think so but you would have to speak to your Dr. about that. I just know it is a good blood test that checks everything not just my cancer markers.
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Karen, if you have low-grade DCIS Stage 0 and you had a biopsy and your doctor says just to monitor it, you are lucky with a capital “L”. Just keep having it monitored just as your doctor says – no worries!
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No he recommended mastectomy but I truly watch my diet and stress
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Karen, you are doing the right thing. Monitor. Stage 0, low-grade DCIS is very amenable to monitoring and, based on these types of blogs and the latest research from progressive breast cancer specialists, is not even considered cancer or even pre-cancerous. Stay informed.
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Thx for the information I feel wonderful also drink green tea every day and good bottled water try to keepy body alkaline not acidic cancer can’t survive in alkaline body
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Hi. Has anyone out there had the dcis ion RT test done?? I have low grade dcis and thinking about having this test done . Also how did you feel about the results? Any comments be appreciative thx Karen
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I go to a wellness doctor also. Vitamin d level is important to maintain
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Judy, sounds like you had a fantastic experience in both treatment and result! I have been told, should I ever have to go the route of a huge lumpectomy, that my saggy breast skin is too thin (I’m 60) to preserve or use in oncoplasty/skin-sparing procedures. (But I’m also a C-cup and it wouldn’t bother me a bit to be smaller.) Maybe modern medicine will do something to improve the use of oncoplasty for women with thin skin in the future. THANKS FOR SHARING.
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I read your story may I ask which physician tarted you in atlanta I live near Atlanta
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Dr. Amanda Morehouse. She is in the same practice with Dr. Barber who is very reputable. Dr Morehouse is young and quietly takes a less-invasive, more cautious approach and uses her own in-house radiologist to analyze images. She is great.
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Hi Maria,
Sorry to hear about Dr. Feldman. Good for others to know so thank you for sharing. First of all, every women would have to have a mastectomy to be absolutely sure there is no invasive cancer…there is always a % chance…even with surgery that there is more that they miss…especially with DCIS…they can not see it all and the imaging is all inconclusive. This is why re-excision rates are so darn high with DCIS…and then they tell you you need a mastectomy. Insanity!!! My story is proof of this!
I completely understand where you are at…like you are just at the beginning of really diving in and getting fed up! That happened to me almost two years after I was diagnosed with DCIS (from excisional biopsy — so I already had surgery before I even knew anything!)…..I had a positive margin and refused all further treatments. I ended up giving in and said yes to lumpectomy due to pressures from surgeon and radiologist saying it had grown a lot (2.5cm) and was now looking invasive (BIRADS 5) from mammogram. Then I asked for an MRI, but that was before I knew the value of RODEO or dedicated breast MRI. The MRI result also stated “suspicious for malignancy” (BIRADS 4)…I had been very strict with diet and lifestyle, but stress was evidently effecting me — due to my mom’s mental health crisis during that same year. I chose surgery over another needle biopsy because I was told it was now most likely invasive — and I did not want a repeat of horrible needle biopsy which I saw as just an extra step that would be inconclusive of entire area. I also felt like everything I was doing was ineffective if it was now growing and had become invasive. Having the malignant-looking area entirely surgically removed proved to me that none of it was invasive — and none of it had morphed to high grade. While it grew in size over 20 months, it was all low grade DCIS according to Dr. Lagios. My original path report said intermediate grade — and I believe my surgeon used this to try to pressure me for surgery at the beginning. The pressures and scare-tactics were very intense! Looking back now, I believe everything I was doing for 20 months (since diagnosed with DCIS and leaving a positive margin) with strict diet was what may have kept it from becoming high grade DCIS or invasive! Since there are no studies of women leaving DCIS and doing alternatives, this is anecdotal, but I believe we are all a study of one and every case is unique and different.
You are already doing a lot of wonderful holistic “alternative” strategies and you are open to taking to the next level! That is fantastic!!
I just wrote about the SonoCine and I plan to do this annually. Maybe also a thermogram every other year. I did RODEO or dedicated breast MRI for 4 years and I really am concerned about the contrast dye so want to continue with SonoCine now. I trust Dr. Kelly and feel he will find invasive cancer at smallest size without scaring me into biopsy for DCIS — which is likely still there. This is what I am comfortable with for me. Everyone has to explore what they feel is best for their situation.
Are you on Facebook — Alternative DCIS group? Angela has high grade and has reduced it with all natural strategies. Great info and support there! So important. Also, how old are you? Have you had hormones checked? Can be balanced with food and herbs — and possibly some bio-identical hormones, but this is an area of unknowns and controversy. I am working on understanding all this now more than ever as I am feeling symptoms of menopause the last few months at age 51!
Sending you a blanket of peace, love, light and protection as you go to see Dr. Feldman tomorrow. He is someone that sounded like he was supportive of active surveillance, but a demeanor that is “arrogant and distasteful” is not someone I would take advice from.
We need compassionate understanding wise guidance based on our unique individual situation and preferences. With int – high grade DCIS, it will be hard to find a medical doctor who will support no surgery. Even Shelley Hwang and others like her would recommend surgery. You will not find an oncologist out there to fully support you.
You may just need a PCP or gyn to order annual SonoCine or MRI. Thermograms you just do on your own and pay out of pocket. Good to have a naturopathic doctor who is an expert on hormone balance like Dr. Reese in San Diego.
Keep on the path you resonate with! There is great wisdom to learn along the way!
xoxo Donna
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What I hate about DCIS – all of this information is so overwhelming.
My story – July 2016, turned 40, routine mam. Xray tech says, don’t be alarmed if you get called back for more images, we have nothing to compare it to, happens a lot, don’t be alarmed. Got called back, wasn’t alarmed, per the Xray techs instructions. Not alarmed to the point that I didn’t go back for those second images until December 2016. The Wednesday before Christmas, I get the second mam and an ultrasound. After the ultrasound, I was told I had breast cancer. The calcifications that were seen on the screen in an area close to the nipple were likely cancer and there was also an area about 4 cm directly behind it that looked suspicious but they were unable to tell if it was cancer without doing a biopsy. I immediately asked if it could be something else and I was told by the radiologist that he was not going to sugar coat anything to get my hopes up, he was 99% sure that it was cancer. I asked if there was a change from the first mam because it had been 6 months between the two. The answer “No. It is exactly the same no changes at all.” I walked to the conference room with the Xray tech, sat down in the chair, I thought about my 3 young boys and I cried like a baby.
Thursday I had an ultrasound guided needle biopsy of the area closest to the nipple and a vacuum assisted biopsy of the suspicious area. The needle biopsy, although scary, local anesthesia stung, but it worked. I felt pressure but no pain from the procedure. I asked if that would work for the second biopsy and was told no they had to numb that area too. The second biopsy was horrible. I had to lay on a hard table with my breast protruding from a hole in the table. They got my breast into position, numbed me and told me not to move because they would have to stop and reposition the breast. They started the procedure and to my shock, I felt pain. They stopped, gave me more anesthesia, waited a few minutes and continued with the procedure. I felt pressure initially and then the deeper they got into the breast tissue, the more intense the pain got but they could not give me anymore anesthesia so they wouldn’t stop the procedure and told me not to move. I didn’t move. I cried. I laid on that table and cried. I couldn’t believe what I was going through. I was in pain and I wanted my mom who was not there because I didn’t want to “falsely” alarm her if it turned out not to be cancer. Friday. I get the call. You have cancer. DCIS. It’s stage 0, we caught it early. You need surgery. It doesn’t look like your lymph nodes are affected so you will only need radiation after the surgery, not chemo – as long as the nodes we biopsy have no cancer in them.
Now the research begins on my part. What is DCIS? What kills cancer cells? How can I shrink this before surgery? What should I eat (didn’t really matter at the time because I stopped eating altogether)? I start researching trying to find somebody, anybody, any group with a diagnosis and lifestyle similar to mine. The nurse navigators have already told me that they felt the reason it hadn’t spread probably had something to do with my diet. I’m not a vegan or vegetarian. I don’t eat a lot of red meat, mostly chicken and fish and I bake my foods more than I fry them. I don’t eat a bunch of junk foods or candy (except when I’m PMS’ing, then I need cake), I don’t drink excessively (a glass of moscato rarely) I don’t smoke anything, the only thing that was lacking was exercise and that was only due to a car accident that I’ve been getting physical therapy for and couldn’t exercise. Other than asthma, I am healthy. They kept asking me did I feel sick? Did my breast hurt? Did my breast leak? Was I overly tired? My response, “No!” I was not sick. I don’t get so much as a cold. My breast didn’t hurt, they did leak a little but not often and I didn’t think anything of it because I breastfed all three of my boys. This is the first major illness that I have ever had in life and it’s cancer!? I’m still in shock.
So I met with my team in January 2017 to decide my plan. Lumpectomy that would result in deformity or mastectomy of the right breast. Those were my options from the doctors. I had already started taking turmeric pills and eating broccoli sprouts because I had read that the University of Michigan had done a study showing that the turmeric killed the cancer cells and the sprouts killed the stem cells. I posted on the woman’s who posted the information’s post asking if that regimin had worked for her and how she was feeling, doing yada yada yada. She never responded so I could only conclude that she either didn’t have the results she expected or maybe she had a more terrible fate. I had talked to the doctors and told them what I was taking and asking if they thought cannibinoids would help and they weren’t sure but they did tell me to keep taking whatever supplements I was taking because they couldn’t see it hurting. So I decided to keep taking the turmeric and the sprouts up until my surgery with the hopes that during prep they would find that the calcs were gone or that the other spot had shrunk but that wasn’t the case by the time I got around to surgery. They wanted me to have the surgery at the end of January, I wanted to wait until the end April but my family thought that would be too long and wanted me to get the cancer out as soon as possible so I conceded and decided to do the surgery mid February. The surgery that I opted for was lumpectomy with oncoplastic reconstruction at the same time. This was a better option to me because I had two separate areas (multifocal) but I didn’t want to do mastectomy, even though that was the recommendation because the area being removed was about 8 cm. What I did appreciate about the process was the team of doctors included a plastic surgeon even though I had already opted for the lumpectomy. They typically only have you meet with the plastic surgeon if you’re having a mastectomy. I met with him and I asked so many questions and the last option that he gave was for me to have oncoplasty which was a procedure that he had performed with many surgeons but had never performed it with my surgeon so he called to see if he was willing to do it and he was. This was still a lot to take in. Major surgery, you could lose a breast or your nipple, but it has to be done.
So I’m not sure of the size of my calcs and the suspicious spot (it is in my reports) but I do know that one spot was a grade 2 and the other spot was grade 2-3 when my biopsy pathology reports came back. From what I read, with grades that high, I felt surgery was the best option for me because I couldn’t find, and still haven’t found anyone that is still alive that just treated the DCIS with nutrition and no surgery. I have children that need their mother so with no one to communicate with who had not already been treated with surgery and chemo and/or radiation, I chose surgery. They did another mam the day of my surgery and the calcs and spot were still unchanged. I made sure I asked. So that was 8 months with no change, with no surgery, with no drugs. During surgery, they tested my lymph nodes and there was no cancer present. My final path reports came back from the surgery and my DCIS in one spot was grade 3, I had clear margins in the suspicious spot but positive margins in the area where the calcs were right behind my nipple. So now they want me to go back to surgery to remove the nipple. The surgeon actually told me that the only reason he didn’t remove the nipple during the surgery was because he didn’t have permission to do so in advance but he could tell that the tissue looked suspicious but he had no way of confirming that without it going to lab to be seen under the microscope.
The surgery itself was hard on me. I believe they used extra anesthesia on me because of how I responded to the anesthesia during the biopsy so I ended up in the hospital for two days because it took that long for the anesthesia to wear off and allow me to walk on my own. I had an allergic reaction to the antibiotic they gave me so they had me stop taking it but not before it gave me the yeast infection from hell. So now I have to decide do I go back to surgery and let them take my nipple or do I go back to surgery and let them take my nipple. I said that twice because they are basically telling me that I can’t start radiation until all of the cancer (DCIS) is gone. I thought the radiation is supposed to kill any cancer cells that they may have missed so why should I go back into surgery if that is the case? And if that is not the case, then why should I do radiation if it’s not going to kill the cancer cells that they can’t see? And in regards to when I need to have the surgery to remove the nipple, the surgeon says, no rush, it’s not going to spread, DCIS doesn’t spread. Well if that’s the case then why did I need to have surgery to remove it in the first place? So now I’m confused and I feel like I just subjected my otherwise healthy body to an unnecessary trauma. I would be even more upset if I have the surgery to remove the nipple and they test it and there is no DCIS in the nipple. Then I removed it for no reason. The surgeon wants me to remove it right away, the plastic surgeon seems to think that he can do a nipple graft instead. The nipple graft would essentially take the tissue and nerves directly behind the nipple but leave the nipple. The surgeon said he took all of the tissue behind the nipple so there is nothing left to take but the nipple. That’s surprising because I still have feeling in my nipple. My reconstruction looks amazing by the way and I’m healing very well despite all of the trauma involved. I do have a blood clot that should dissolve, so I’m told.
So that is my story, sorry so long. Hoping someone has had a similar story and had to make similar decisions and what the result of those decisions were. Did you change your diet and if so, how did you change it? My aunt told me I need to stop eating meat altogether and remove dairy too. Nothing but salads I guess but there are people who are vegetarian and still got some form of cancer so I am not sure that is the way to go. Are you still using the microwave? I heard that now that I have been diagnosed with cancer I need to stop using the microwave. It’s to the point that I’m scared to eat anything. Half of the time I have to force myself to eat and it’s been that way since this horrible diagnosis. As much as I wanted to cure with supplements and the like, I just couldn’t find anyone who had done only that so now I’m in the spot that I am in and have more decisions to make. Hopefully this gets posted and responded to before I have to make my final decision in the next few days.
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Thanks for sharing your story….Angela on Alternative DCIS Facebook group has been doing only diet, lifestyle and hormone balance as treatment for high grade DCIS — and has MRI views of her DCIS shrinking. She may be the only one. Every case is different. Have you been on her Facebook page. Many people treating INVASIVE cancer naturally through diet, immune building and lifestyle….good resources: http://www.ChrisBeatCancer.com; http://www.ElynJacobs.com; The Truth About Cancer. Loads of resources here and on http://www.dcisredefined.org
Did you get 2nd pathology opinion?
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I desperately need help I was diagnosed with dcis high grade in 2010 I had a wide local incision plus only 3 rounds of radiation because I had a bad reaction to it in Jan 2016 it came back same grade but because of other health issues its still ongoing ive also discovered I have the braca 2 gene just so overwhelmed with everything
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Joan, so sorry to hear how overwhelmed you have been. Please email me at dp4peace@yahoo.com and I will give you my phone # if you’d like to talk. I hope you have found some good support and solace. Sorry to take so long to reply. It’s been a very busy time for me. Sending you a hug, Donna
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I have read all of the posts and I see nothing where anyone has had several instances. Starting back in 2009 I they found calcifications in my right breast. Went thru the biopsy and then lumpectomy to remove it. It was atypical ductal hyperplasia. About 6 months later there was calcification in the other side. Went thru the biopsy and then the lumpectomy – ADH again! Had several more mammograms and an MRI, all ok until 2012, calcifications in the right breast again. Another biopsy and lumpectomy – ADH again. More mammograms and MRI’s and even ultra sounds. Everything was good until March 2017, calcifications again in the right breast! Couldn’t do a biopsy because it was too deep although the area was very small. So went right for the lumpectomy. This time it was Intermediate grade DCIS stage 0. Recommendation is radiation followed by hormone replacement therapy – aromatase inhibitor as I am post menopausal. Part of me is considering a mastectomy because this has been such an on going thing. I am very small busted and was already quite lopsided before all the lumpectomys. I am not they type of person that could drastically change my eating habits. I am somewhat overweight and am trying to exercise more. I have met with a few doctors but have not met with a surgeon regarding a mastectomy yet. Has anyone had a similar situation?
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Recurrence of DCIS and calcifications supports that you have slight defects in your genomic stabilization, which allows repeatedly the development of tiny tumors. Calcification of tiny tumors is the consequence of self-directed death of these DCIS lesions. These small lesions can be cured by the improvement of metabolic and hormonal imbalances without lumpectomy. Mastectomy is a major medical mistake, do not think about it! Cancer is curable, but we should forget the drastic therapeutic methods: chemo, antiestrogen, mutilation and radiation. Please, share my publication among your doctors:
Causal Therapy of Breast Cancer Irrelevant of Age, Tumor Stage and ER-Status: Stimulation of Estrogen Signaling Coupled With Breast Conserving Surgery*
Zsuzsanna Suba
Published in: Recent Patents on Anti-Cancer Drug Discovery
Publication date: August 2016
Publisher: Bentham Science Publisher
DOI: http://dx.doi.org/10.2174/1574892811666160415160211
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Thank you Zsuzsanna — I know you have made similar comments before….I will share your info!!
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I have already had the lumpectomy and they are suggesting radiation followed by hormone
replacement therapy. I am post menopausal so it would be an aromatase inhibiter. The doctors didn’t really bring up the mastectomy it was me that brought it up because I am so scared as to what will happen if it comes back again. Im scared it will come back as an invasive cancer the next time.
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Radiation, chemotherapy and mutilation (mastectomy) are medical mistakes, as statistical data support their harmful effect and a shorter tumor free survival of patients treated by these methods. Aromatase inhibitor is not a hormone, but rather a toxic hormone blocker and it may have only transitory effects against tumors attributed to the extreme defensive counteraction of patients. The long term result of mastectomy is worse as compared with lumpectomy as the removal of defensive mammary fatpad results in desolated milieu, which is advantageous for the recurrence and spread of tumor cells. The most important tumor prevention in your case is estrogen replacement (Premarin) and the achievement of a good balance of your metabolic and hormonal systems by means of strong physical activity and natural light exposure. Please, share my publications among patients and physicians! DOI: http://dx.doi.org/10.2174/1574892811666160415160211
Click to access familymedicine-3-1081.pdf
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Hi Donna,
I am looking forward to reading your posts and information you have on DCIS. I was just diagnosed last week with stage 0 DCIS in Situ – intermediate grade. I am meeting with the Moore Cancer Center in SD Monday. My boss also was diagnosed with Stage 1 DCIS and she was lucky to have Dr. Esserman!! There is so much confusing information on the internet about DCIS and treatment options are all over. I actually found out about your site because I came across an article from the SD Tribune.
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I was just diagnosed with Stage 0 DCIS intermediate grade last week. I am so happy I found this site! I had an abnormal mammogram.. extremely dense breast. They found calicifications deep against my chest wall and the radiologist marked them suspicious. I had an excisional biopsy and the pathology came back as DCSI. Meet with my surgeon to go over the results and she told me I need a lumptectomy, raditation ( or I had 60 to 70% chance the cancer would come back) and Horomone therapy because the cells were estrogen positive. I left her office in disbelive that something so small and stage 0 needs radation !! I am meeting with the breast cancer team at UCSD Monday! I am very eager to see what they say. I am going to see Dr . Blair , has anyone gone to her? I have so many questions and I am scared of making the wrong decision . I do NOt want to take hormone therapy or radiation!!! Any fees back would be greatly appreciated.
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Glad you found my site Sylvia. You may want to look into the COMET Study — they are offering at Sharp. No difference in survival whether you do surgery or not. Radiation not necessary as no survival benefit and same with tamoxifen. Lots of side effects which too many doctors downplay….many medical professionals (nurses too) and even other DCIS patients and women on the support forums/groups spin it so you will feel a need for the treatments but you do not NEED the treatments to live a day longer! DCIS is not cancer….the treatments are to prevent cancer from progressing — but research now reflects that most future occurrences (more like 70-80%) are associated with HIGH grade DCIS. You may want to get a 2nd opinion from Dr. Lagios. My DCIS was initially diagnosed as “intermediate” grade, but Dr. Lagios said it was ALL LOW GRADE for sure. Also, you can ask for the Oncotype for DCIS test…this can also give you more true insight into your cells if they are more low risk or more high risk for future occurrence of either DCIS or invasive. Please know that I am here for you if you need more clarification about anything and if you need to talk by phone — or even meet in person! Since you have extremely dense breasts, I’d recommend follow up with Dr. Kelly in Pasadena — he invented the SONOCine Automated Whole Breast Ultrasound…and this is what I am now doing for monitoring breast health. It has been nearly 8 years for me on this journey and I am very grateful I stopped all further aggressive conventional recommended treatments that I was being heavily pressured into! It is terrible how they scare women into these extreme treatments that do come with a lot of harm and cost! Stay strong Sylvia…I am here for you!! Blessings, Donna
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Hi Donna. I have stage 0 low grade DCIS. Have you seen any data as to the percentage of that type of DCIS becoming invasive? I only have been monitoring this DCIS for 2.5 years no changes I have not had a lumpectomy or mx would like any input from you karen
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Thank you for your response!!! This is so helpful and I am for sure going to get a second opinion before I do anything! I am going to see what the pathologist from UCSD is going to state about my results . It’s amazing how the surgeon who did my exisional biopsy was so quick to do a lumpectomy and Radiation. That is why I am going to a second option and a third at Sharp . I am going to make an appointment with Dr Larios… I hope I can get in. I won’t do anything unless I am 100%confident. I know that I do NOt want radiation … it Just seems so crazy for something so little and it’s not even a tumor. Thank you again for this site …. it actually helps me with my anxiety and I know that I will be OK!
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Donna, I would love to talk to you over the phone before my appointment if you are available. I would love to meet you in person and I could even go to you 🙂 please let me know how I can get in touch with you .
Sylvia
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Sylvia, please email me at: dp4peace@yahoo.com
we can arrange a time to talk/meet. 🙂 Donna
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Hi Karen,
Unfortunately there is little data on % of low grade DCIS becoming invasive. A more important end point is survival and there is data showing no difference in survival for surgery vs no surgery with low grade DCIS. Here is a good article to support your choice for monitoring vs surgery: https://www.medscape.com/viewarticle/846257
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Thank you !!
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Can you please tell me what made you find this DCIS, WAS IT BY MAMMOGRAM, or by self exam, was there any discharge from your breasts, I have been having green discharge from mine since my last daughter’s birth and breast feeding her. My doctor told me that it’s normal to have this due to certain medications I am on, so I gave them up for about 3 months and yet still have this drainage, I went through the into scan by blood and don’t have any markers for that but my doctor isn’t doing anything about it and it’s been going on for 8 years, I have not had a mammogram and I’m 37 years old, please inform me about how you found this and what if any discharge came out of your breasts thank you Sarah Dille Shade
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Mine was detected from a mammogram but I had no discharge no r lump
Best wishes
Clare
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Found on mammogram at age 44. No discharge. No symptoms. Needle biopsy found ADH then wide excision biopsy found DCIS. Read details at “Donna’s Journey.
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Question…what about the dcis that is really invasive but shows up on needle core biopsy as dcis? I’ve heard of this happening…first diagnosis dcis then after lumpectomy or mastectomy, pathology shows it’s invadive??
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Yes, this is a known problem….but generally with certain “high-risk” characteristics. Women deserve better more conclusive imaging so this doesn’t happen. How can we rely on imaging and biopsies that miss real dangerous invasive cancer???? Here is a recent article discussing “upstaging” and risk factors
https://www.medscape.com/viewarticle/732720#vp_2
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Hi – I’ve been diagnosed with non-invasive, grade 2 DCIS. All margins clear and genetic testing came back all negative. ER+ and PR+. No family history and very healthy person otherwise. I had a lumpectomy and now in the process of talking to docs about possible treatments. I’ve read it all and am disappointed after today’s appt with onco.I felt no comfort in that my personal condition can lead to less aggressive options. According to onco BOTH radiation and Temoxifen are recommneded and that a lot of women choose to take Tamoxifen to my surprise.If I’m not a good candidate for a less aggressive treament…..who is? Talking to radiologist next week. I’ll definitely be looking for second opinion and would like to know if anyone can recommend a reputable specialist in the New York area. I’m willing to travel as far north or south, if needed. I live in the Philadelphia area.
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Glad I found DCIS411. I went through a horror 11 months ago. Doctor “ordered” me to have mammogram- first ever – bad experience-was told to come back for a 2nd round-did not want to – doctor said I “had” to– told I had calcifications- MUST DO Biopsy NOW. Almost went- then started my own research , cancelled appt. Went back to doctor telling him how unnecessary biopsy was and that it resulted to a Scam. Have had many arguments with him and said I will never do another mammogram again. He actually told the radiologist to schedule me for surgery without even speaking to me or getting consent. I am on a crusade now to have the x-Rays destroyed and removed from my records. I cannot now legally call myself a healthy individual. I was thrilled to find your name and website . I now know I am not alone . I was bullied into almost having a painful mutilsting surgery that would have wrecked my life. I need emotional support more than ever. I am still reliving this experience every single day.
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Hi everyone and anyone who is reading my post. I was diagnosed with DCIS stage 0 noninvasive high nuclear grade. I went ahead and had a partial mastectomy x2 for another atypical area they had found. The margins on the partial mastectomy came back positive extended to the “superior and posterior” at 0.3 mm. DCIS is 10 mm or greater from inferior, medial and lateral margins. Still not clear on what it all means and feeling defeated because I was trying very hard to keep my breast because I also dont agree with the protocol and guidelines they use for something at such an early stage but surgeons always push for a mastectomy on you. I was given 2 options now after the positive margins, Go in for a second surgery or lumpectomy to take out more margins and see if those are cleared OR go with the mastectomy. I am lost right now I have about 7 days to make my final decision but I still dont know whats best. I would like to just leave it alone and never go back, get into supplements and some alternative care but I’m torn on what to do. If you can please give me any info or guidance on this it would mean the world to me. Unable to sleep or think staright right now. Thank you for creating this amazing webpage that can help and encourage others!
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Hi Lara!
Before doing anything else, if it were me, I’d get a second opinion, and also if you can have your biopsy slides reviewed by Dr. Lagios that would give you more info. . I know it can be expensive to get second opinions if the doc is outside your HMO or insurance doesn’t pay, but in these situations, it can be a life changer. If you can get in to see Dr. Laura Esserman in California to review your case maybe she can give you some alternatives.
I’ve refused biopsy for eight years since 2011 when microcalcs were first seen on my right breast. I know have two in the right breast and one on the left breast. All have been monitored yearly and the radiologist report for this year’s follow up FINALLY used the word “stable”, meaning NO change in any of these calcs. Yet, when it was first found on the right side, I also was pushed and pressured to get a biopsy immediately. I refused that and have been very happy with my decision so far. So when you say you have only 7 days to make a decision, please don’t cave in to these pressure tactics of these doctors, surgeons and radiologists! You have time to sort your mind out and get your strategy in place. You are not going to die in 7 days if you don’t rush into this or that treatment. This pressurization is used as a scare tactic for sure. And even in your own case, you say the calcs hadn’t changed in 8 months, and yet they were acting like it’s a big health emergency. This nonsense needs to stop and women need to get hold of their own health decisions and stop being pushed around like sheep.
Good luck and please update on what’s happening! We all have our own journeys here with microcalcs, DCIS, etc. etc. Support and caring is here for us! Knowledge is power!
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Hi Lara, I am in the exact same position! Can you tell me what you decided?
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I have recently been diagnosed with DCIS Intermediate grade. The convincing information you are providing has helped me greatly to arrive at the decision not to follow up with radiation and medication after a lumpectomy . I had the same diagnosis in my other Brest 23 years ago and had no additional treatment after a lumpectomy. Nothing ever happened
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Hi Everyone. I have been reading everyone’s comments on this website..,.its great! I wanted to share my DCIS story with you all. In 2015 I was diagnosed with low grade DCIS. I went to talk to a breast surgeon and stated I had two options a lumpectomy or mastectomy. I went home and spent months reading about DCIS. I then called another breast surgeon. I was not ready to
have surgery. He told me that I could try careful monitoring and take exemenestane get mammograms and MRI’s every 6 months… alternating them. I have not had any surgery and really no significant changes in 4 years! So many DCIS cases never become invasive cancer. I was told by my physician that only 20-30% become invasive, That means I have 70-80% chance won’t become invasive. I am asking you all if anyone has opted out of surgery and doing only monitoring of their DCIS? Love to hear from you !
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Hi Karen and everyone else. I felt uplifted when I read your post today! I was diagnosed with DCIS, intermediate grade, only 10 days ago. I was told that I had to get a lumpectomy plus radiation to get rid of it and to avoid cancer in the future. They gave me a date for the surgery on May 6th, but today 4th May I told the breast surgeon that I wanted to cancel the operation. I have read tons of medical articles about it these past days and have come to the conclusion that active surveillance is a better choice. I feel very relieved right now and also very proud about myself that I managed to take a rational choice in a a very emotional and difficult time. I don’t know how I will cope with the uncertainty in the times ahead of me, but I know that if I had gone through surgery and radiation, I would have worried too and asked myself whether this would have been overtreatment and unnecessary. I feel exhausted right now, but at the same time it feels so good to have made up my mind!
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Hi Ase: I read your post just now on Dcis411.
I’m so glad I didn’t have any surgery following the biopsy. It will be 5 years since I was diagnosed with the low grade DCIS and doing well with the monitoring. I am on exemestane and no side effects. My onc dr having me do alternating mri/diagnostic mammogram about every 6 months.
May I ask what your physician said when you said you wanted to only be monitored?? Since my DCIS is estrogen driven my onc put me on the above med. just liked they used for the COMET trial.
I wish you the best!!! Please let’s keep in touch .
Karen
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The breast surgeon said they had to accept my choice, but made clear that I was in a greater risk of getting cancer than women not diagnosed with DCIS. I said I was fully aware of that. Since there was no tumor, they couldn’t say anything about hormone receptors. That’s how I understood it at least. I’m thinking that new screening in 6 months is too fast, but that’s what the doctor suggested. The area with calcifications and cell growth was 5cm in one duct. Active surveillance is very unusual in Norway. I am very glad to hear about others who think the same way and opt for AS.
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I wish you the best !! Most doctors tell you to have surgery with the diagnosis of DCIS but you also have time to think about it. I feel if someone tells me I have time to think about it, it can’t be that life threatening. The AS is not popular in the USA.
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Thank you, Karen!
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Hi all – as I consider active monitoring in my case – I am curious. Can the biopsy that I had cause any “chance” of the DCIS escalating to invasive? Despite my technical background I am not understanding how the needle biopsy worked. I have read that while biopsy has a “chance” of moving cells or displacing malignant cells – it’s not something that has been recorded as frequently happening. I just feel like “have I opened a door” that makes it harder to do active surveillance? Did the needle actually go in the duct and extract the calcifications from there? Is that area not considered “breast tissue” which I understand is where invasive cancer spreads? Thank you for any insight.
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God bless you, Donna, for sharing your experience and making this website available. And thank you Jill, for posting Donna’s website on the DCIS non invasive breast cancer group site. My name is Mindy Jane Moore and I wrote a book I uploaded to Amazon.com on Thanksgiving titled DCIS Treatment: I said no. I was told if I attempted to “market” my book on the group site I would be kicked off. After reading the most recent heartbreaking post by a girl who has no idea she has options other than surgery, radiation and drugs, I’m going post my book title because I believe with all my heart that women are entitled to read about options.
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Awesome Mindy about your book! I am look forward to checking it out and sharing it here and in my FB group/pages!! Bravo for helping women know they have options!!! Our tribe is growing😃. Many blessings to you
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Thank you, Donna. I talk in my book about how my team of breast cancer doctors didn’t want me to leave my treatment discussion appointment without scheduling my surgery. When I told them I thought I would investigate s natural approach to treatment, they sent in a “nurse navigator” to convince me that if I didn’t schedule the surgery, I was jeopardizing my chances of survival. Oh my goodness! I am so thankful I had the strength and knowledge to walk out of there! My heart is just breaking to read the posts on the DCIS group sites of women who are scheduling those surgery appointments immediately out of fear and lack of information. I am so thankful for your passion to inform, Donna. Keep paving the way, my friend!
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Has anyone had areas of high grade and left it alone? I had a lumpectomy and 4 of the 6 margins are not clear. There are also areas of high grade. I’m not sure if I should try for clear margins or just leave it alone. Any advice?
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Hi, I came across this site on a cancer forum. I am in my late 40’s and in the uk, I have intermediate DCIS diagnosed from biopsy, I also have breast cysts. I’ve been told I need a mastectomy as two clusters of micro-calcifications were found then the usual reconstruction options which frankly all sound scary. They did say there was the option of active surveillance which was just such a brief comment and moved quickly past. I’m absolutely terrified, it feels so shocking and drastic to literally just chop part of me off. I can’t bring myself to agree to mastectomy yet but don’t want to put myself at risk. I’m so confused.
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Hi Faye, have you looked into the LORIS trial? https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-comparing-surgery-with-active-monitoring-for-low-risk-dcis-loris
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Hi Faye, I understand the awful fear you are experiencing. Over five years ago I was presented with a similar dilemma but I had high grade DCIS and they also found a tiny tumour which was scooped up in the biopsy. So in utter terror I agreed to a mastectomy and reconstruction. I’m not going to tell you it’s great and I think about it every single day but it’s not that bad either and I’m adept at obtaining lovely bras to keep me feeling normal and nice. However, I absolutely refused to proceed with a ‘just in case’ course of chemo, herceptin and radiotherapy and I have no regrets so far. I changed my lifestyle and my diet. If they can offer you the watch and see option because it’s not high grade and no actual tumours then do your research- look on American sites too. There is loads more info now on DCIS than even 5 years ago and it certainly isn’t a given that you should have surgery. Good luck
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Thanks for sharing your story. Wish I would of saw this when I was diagnosed. Your description of fear and panic and wanting it gone is correct and because you go to doctors who you believe are there to help you trust what they say. Not one of my doctors said I didn’t need it removed, 1 mentioned I had time but with it being 8cm not much time. I had a double mastectomy but now that I have found you… I will share this info with others.
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Hi there, all you wonderful women! 4 years ago, a wonderful radiologist spotted an 11 cm in ductal lesion in my left breast….she said the good news was that it was there in the images from the year before, but the other radiologist had not caught it….so, she could see it had not grown in the year. I went for a mammogram and nothing showing up there. it was recommended i have an MRI guided biopsy. I was quite scared, as my maternal grandmother, then my mother, and then my sister all had breast cancer, my sister died from stage 1V, or was it all the heavy procedures she endured, after 16 years. i began to search the internet, and i came across this blog, and decided to just wait and watch….so another 2 years and 2 more MRIs. no new growth. the radiologist suggested i could go for 2 years before the next MRI, if i had an ultrasound every 6 months. I had one ultrasound 9 months later, totally normal, no lesion showing up there. So now it’s time for another ultrasound, or could go early for the MRI…..this week i heard from an old friend that she had been diagnosed with stage 1 breast cancer, 4cm in ductal calcifications showing on her Mammogram. yesterday she had a double mastectomy….it brought up a lot for me, so i am back reading this blog again….i don’t know what high, medium or low grade means. Can someone clarify that? Am curious as to whether i should go for genetic testing or have the MRI guided biopsy. Any thoughts? i am 69 years old and pretty darn healthy i think. i eat well and ride my bike around, dance as much as i can, get lots of love and laugh a lot!
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Hi Carole,
Sorry for the delay in reply. Have you done any follow up imaging or biopsy yet? Unfortunately there is no imaging technology that can definitively show if areas of concern are low grade DCIS or high grade or invasive! This is a major dilemma — and why I have been researching like crazy over the last 11 years for the highest quality most conclusive imaging. We want to avoid biopsies if we can as they are quite invasive….and can open pandoras box to a lot more fear, anxiety and over-treatment. As Dr. Laura Esserman stated: “If it doesn’t look like high grade DCIS, we should leave it alone.” Sounds like you have an excellent radiologist that you feel confident in. This is critical, especially with long-term follow-up of known DCIS or suspicious areas being watched. Look into abbreviated MRI, automated ultrasound and thermography. Nothing is 100%. Some info and studies on various imaging methods here: https://dcisredefined.org/choices/imaging-and-monitoring/
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thanks for your response Donna. just when i was supposed to be going in for the next (4th?) last fall(2020) MRI, i actually went to the breast cancer clinic at Legacy, Good Sam here in Portland. had a manual and very thorough going over of my breasts, was advised to go for a mammogram and ultrasound. Legacy really made everything low stress, low lighting, a lovely room to change in with two lovely chairs and a table lamp. everything catered to taking care of the person, me! the ultrasound technician took so long and was so thorough, that i thought she must have found something. Then the mammogram….all low light, low stimulation for the patient in that stressful, scarey situation. The doc came in and said, “you know, i think this is just the way you are built. there has been no change in the lesions showing up in your MRIs in all those years, and we still don’t show anything with ultrasound or the mammogram” I am so glad i didn’t even have the MRI guided biopsy, that i was highly encouraged to do, and that i could be patient and wait and see. This blog helped me so much Donna! and i shared it with Dr Hunter, the radiologist, as well. Now i am becoming wary of the gadolinium contrast dye they use in the MRIs, and researching that as well, as it is a heavy metal that can get deposited in our bones, and brains. I did read of a new way to diagnose breast cancer without the invasive biopsies, but it was some time ago, and cannot remember if it was a development by BioOptics or what, although i did come across this regarding screening breakthroughs, in my search: https://www.nature.com/articles/s41598-020-70103-0. I hope this info can help anyone.
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Thanks for your message Carole. Glad to hear things are well and this website has helped you! 🙂 Thanks also for the link. DBT is 3D mammography which uses more radiation than regular mammography. AWBUS uses no radiation or contrast dye from MRI. http://www.sonocine.com/ Many blessings for continued good health! Donna
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Hi Everyone!
I am so happy to have found this site – not happy about the reason this community is here but I am glad it exists. I have just been diagnosed (yesterday) with “Intermediate to High” grade DCIS (they didn’t not say why it’s not one or the other yet). I meet with an oncologist next week. To say the least – what I’ve read so far about DCIS has me thinking maybe I should not have had the biopsy so quickly and just watched it? My calcifications were a new find this year and I rushed to second mammo and then biopsy, thinking everything would come out normal. With that said….If I had low grade – I would probably just wait things out but my intermediate to high has me concerned and the variety of perspective and info on DCIS has me stressed and confused. I am a black woman and 43…so I think that puts me at more risk? I have also read where biopsies are sometimes misdiagnosed, so I plan to get a second opinion. Any advice from anyone…I appreciate. My mind is racing right now.
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What did you end up doing? I have the same diagnosis and am 49.
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Hello, I am glad to have found this site. In July 2019 I was diagnosed with IDC (ER+, HER2-), had an IORT lumpectomy in Oct. 2019 with no lymph node involvement and clear margins and, at my post-op appointment learned I have Extensive Ductal Component (EIC) or DCIS in 50% or so of lab sample. Standard of Care recommendation was radiation and 5 years Anastrozole (65 and post-menopausal). I opted for natural supplement use and cautious waiting. So far I’ve been unable to find anything about EIC on the DCIS 411 site. Suggestions?
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Thank you to Donna for sharing your story and for the pointers. I was diagnosed by pathology upon excision of a papilloma. There was DCIS and three micro foci of invasive. There were close margins for the DCIS so I had a second excision. Again close DCIS margins in two spots but no additional invasive. Very small breasts, surgeon would not do another excision and advised mastectomy. I asked for a Ki-67 test which came back at 1%. Grade 1, very low grade. Was scheduled for surgery but just couldn’t do it. Had a telemedicine consult with Dr. Laura Esserman who advised not to do more surgery, and I took her recommendation. This was mid 2020. I am on 5 mg Tamoxifen and many supplements. Did consider RT and was aghast at how the radiation oncologist stacked the numbers to show greater risk and therefore greater potential benefit of RT. Decided against any more treatment for now except for continuing the Tamoxifen, but continue to gather information. Also had thermography. Mammo and US Imaging never showed anything and is now useless because of the tissue damage from the excisions. My invasive was so small that it was inadequate for the Onco Recurrence Test.. Living with the uncertainty is difficult but preferable to having a mastectomy at this juncture.
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Good morning, I was recommended to come to this page while watching the Chris beat cancer live video. I had a mammogram that showed a tiny area of micro calcifications. The radiologist wasn’t going to do anything about it and then at the last minute decided to recommend a biopsy. The biopsy came back as DCIS in late November 2020. The biopsy results came back as DCIS grade 1/2 cribriform with necrosis. I then had multiple test and an MRI. The MRI showed an area of focus against my chest wall measuring .5cm. I was scheduled for a lumpectomy in Jan. The results of the lumpectomy came back as DCIS grade 2/3 and close margins. My surgeon recommended that I go for another lumpectomy and a mammogram pre re-excision. The mammogram showed a tiny area of faint micro calcifications and the doctor called to update me that she will be removing that area also. I had my second surgery three weeks ago and received my results on 2/24. The doctor came in the room acting really nervous. She then told me that everything that she cut out had DCIS stage 2/3 cribiform and solid pattern. It also came back as close margins again. She then said that at this point she wants to do a mastectomy. I asked her where did all the extra DCIS come from when it wasn’t seen on mammogram or MRI with contrast. She responded that she didn’t know. The whole time she was talking, I felt in my spirit to RUN. I asked her for a copy of my most recent pathology report and left as quickly as I can. It all didn’t seem right or feel right in my spirit. I am now refusing anymore surgery, radiation or hormonal therapy. I am determined to treat this holistically. I pray a lot and I am working on my thoughts. I will admit that the fear is real right now. I am determined to learn all that I can. I am so grateful that I was directed to this website.
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Wow Latisha….sounds so similar to my experience. Glad you found this website after listening to your spirit and instincts. We have women’s intuition for a reason!! Sadly we both got pretty far down the rabbit hole with multiple biopsies and surgeries before this fully kicked in, but my experience of 10+ years later (after running away from the suggested cures) has proven the system, doctors and scary statistics wrong. There is no one size fits all. Every person is unique so we really can not compare or go by what someone else does. Best thing to do is continue listening to your gut and get more INDIVIDUALIZED info and resources for your HEALTH. I started to ask, what could be at the root of “abnormal cells?” And I also explored, “what is at the root of “overdiagnosis and overtreatment?” The fact that you are listening to Chris Wark’s video tells me you are on a wonderful path of true health enlightenment — and why you were directed here. For me, DCIS was a wake-up call to understanding and taking charge of my own health as well as an awareness of how our sick-care system uses fear and disease-mongering, rather than promoting health and well-being (body, mind, spirit). There is a great deal of info on this site, but please feel free to reach out if you have questions or need more support. Much love and blessings, Donna (dp4peace@yahoo.com)
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Thank you Donna for replying 💛. One of the reasons I’m refusing conventional therapies is because I feel within my heart that they don’t solve the problem! Until the problem is fixed, DCIS and other things will continue to develop. I know one day I will have my testimony and use it to help others. Thank you so much.
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Thank you so much Donna for sharing some of your story with me. I do feel that cancer is a symptom and until I address the problem, it will just keep returning or sickness will manifest in another way. I am also looking into having the tissue examined to determine my true risk of recurrence. Thank you so much for your support I will pay it forward. I know I will have a testimony one day that will help others.
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🙂
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Hi Latisha, I had a similar experience. Had an excision to remove a benign papilloma. Pathology showed three micro areas of invasive plus DCIS. Close margins, and close margins again after a second excision (no invasive the second time). Very low grade, Ki-67 of 1% (if you did not have this test, you may want to request it). Was advised by local surgeon to have a mastectomy and by a second surgeon to not have more surgery, but take Tamoxifen. There is a “nomogram” developed by Sloan Kettering to help you understand your risk of recurrence — it is available free online. It is not precise but helps you understand your risk and the potential benefit of different treatments. You may want to check it out. I decided no more surgery. Am taking 5 mg Tamoxifen and many supplements. Also following restricted period eating, and plenty of exercise. My risk of recurrence is very small but not zero. I just need to keep my head in a place where I can sanely and rationally manage the risk — I can have the surgery if a recurrence happens. In my case I feel that the cancer was provoked by years of HRT. Now having stopped the exogenous hormones and started Tamoxifen, I feel that my chances of progression are very, very small. Learn as much as you can about your own pathology. Consider having the slides looked at by a second lab. Educate yourself. No physician understands your own situation as well as you — this was told to me by a physician!
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Hello Deborah, thank you for sharing your story and for the advice. I’m currently looking into having a similar test like Ki-67. I thank God for leading me to this page.
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Great site! Re the screening figure , the mortality reduction is actually zero (zero overall mortality benefit with screening ). Consider adding that below the stats you show stating the absolute risk reduction for breast cancer death that you state (which might be an overestimate). And label that as breast cancer death
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Hi everyone,
As always, I am posting my yearly update to my microcalc adventures. I’ve been posting here for 10 years, and I know it’s important to update so that others can see what’s been happening.
In went in for my diagnostic mammogram to follow the microcalcs that were first seen in 2010. At that time, I did my own research, found DCIS411 and others in the breast cancer field who recommended against doing overly invasive biopsy. My “small grouping” of calcs had been rated BIRADS4 (biopsy recommended). I declined the biopsy.
For every year since 2010, I have had a diagnostic mammogram, and thus far have had little to no progression whatsoever of these calcs. I have continued to refuse a biopsy, opting for surveillance. So far, I’ve continued to be very happy with my approach. No biopsy, no invasive treatments, tests,surgeries, etc.
In that time, I have actually had TWO radiologists pronounce my calcs as benign or probably benign based on the lack of change. Others have continued to play the fear game and categorize the images as BIRADS4, biopsy recommended.
This time, the radiologist rated it BIRADS3, no biopsy recommended at this time, probably benign. Very pleased with that, even though it still sucks that radiologists are so worried about their CYA (cover their you know whats) instead of relying on science and medicine.
The bad thing this time is that I actually got into a very heated argument with a mamogram tech She wasn’t a radiologist, just the tech (the one who squeezes boobs into the mammo machine). This woman proceeded to harangue me during the entire exam, even though I told her my 10 year history upfront, and why I had not had a biopsy. It was as if her ears were closed to what I was telling her.
She said, “aren’t you worried??????” and she also used the word “lethal” several times. Are you kidding me? I found myself holding my hand up to stop her nasty berating attitude! She told me all about her own personal experience with breast cancer, how 25 years ago she found the same thing and calcs are a fore runner to breast cancer and yadda yadda yadda yadda. I tried to be polite to this totally unprofessional woman (who has been at the radiology practice there since I’ve been going there, so she obviously has a lot of experience and seniority there), but I finally had to ask her to stop with her lecturing of me, that I knew what was going on with my particular case and to quit trying to “fear” me. I tried to speak to her rationally, but she was clearly hysterical or using her own situation as a guideline to my situation.
She had no authority whatsoever to speak to me as she did. She was totally outside her professional ballpark and I can only imagine what she does to other women during the day. It makes me sick to my stomach to think about all the women she has created unnecessary hysteria and fear within. Maybe they keep her on staff as the “professional fearmonger”. I have no idea.
Anyway, she went away and came back several minutes later to let me know that the radiologist said the calcs were “stable” (duh….that’s what I had been trying to tell her), and to come back in 6 months. She then said, “well, I guess you aren’t going to come back in 6 months, are u?” I said, “No, I come back every 12 months and feel that 6 months is overkill in this situation.” She looked at me rather oddly, as if maybe…………….JUST MAYBE…I had planted a seed. That would be nice, huh?
I wish she had been more open to education and information, and I truly tried to do so in that brief time between arguing with her and trying to calm her down. I like to think my words and my example has some impact on her, although with her hardcore behavior, I doubt it.
So, that’s the latest. Going on 11 years now, NO BIOPSY, and none recommended this time. What will next year bring? Who knows? But so far, so good! I urge every woman reading this who has been automatically in knee jerk reaction told to get a biopsy for microcalcs to DO YOUR HOMEWORK, ask questions, don’t rush out the door in a panic into the biopsy suite or the surgical suite, and don’t let yourself be treated like sheep or cattle. I didn’t, and I”m very glad I didn’t!
I’m fully aware that next year’s mammo may show something different. And I told Miss Hysteria that as she was berating me. But I wanted her to realize that her approach was wrong, and that the “standard of care” regarding microcalcs in the U.S. is WRONG. This protocol needs to be revised to allow women a surveillance option. I am convinced that the thousands up thousands of unnecessary biopsies connected with microcalcs has literally kept the mammo industry alive and funded. At our expense and at the expense of our health.
It’s a scary thought and one that needs to be faced and discussed by the medical world. NOW!
Anyway, I will update again in 12 months and let you all know what (if anything) is happening with my microcalcs. btw, at one point, they had found calcs in BOTH breasts (left and right). Oddly, there hasn’t been another mention by them of the left sided calcs . Maybe they decided to drop it and not push it with a patient who is informed as I obviously am. Who knows?
Take care everyone, I follow this board every day, and my heart goes out to all of you who are fighting this information battle together. Hang in there, ask questions, and we will see improvements in care in the future!!
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Hi everyone,
As always, I am posting my yearly update to my microcalc adventures. I’ve been posting here for 10 years, and I know it’s important to update so that others can see what’s been happening.
I went in for my diagnostic mammogram to follow the microcalcs that were first seen in 2010. At that time, I did my own research, found DCIS411 and others in the breast cancer field who recommended against doing overly invasive biopsy. My “small grouping” of calcs had been rated BIRADS4 (biopsy recommended). I declined the biopsy.
For every year since 2010, I have had a diagnostic mammogram, and thus far have had little to no progression whatsoever of these calcs. I have continued to refuse a biopsy, opting for surveillance. So far, I’ve continued to be very happy with my approach. No biopsy, no invasive treatments, tests,surgeries, etc.
In that time, I have actually had TWO radiologists pronounce my calcs as benign or probably benign based on the lack of change. Others have continued to play the fear game and categorize the images as BIRADS4, biopsy recommended.
This time, the radiologist rated it BIRADS3, no biopsy recommended at this time, probably benign. Very pleased with that, even though it still sucks that radiologists are so worried about their CYA (cover their you know whats) instead of relying on science and medicine.
The bad thing this time is that I actually got into a very heated argument with a mamogram tech She wasn’t a radiologist, just the tech (the one who squeezes boobs into the mammo machine). This woman proceeded to harangue me during the entire exam, even though I told her my 10 year history upfront, and why I had not had a biopsy. It was as if her ears were closed to what I was telling her.
She said, “aren’t you worried??????” and she also used the word “lethal” several times. Are you kidding me? I found myself holding my hand up to stop her nasty berating attitude! She told me all about her own personal experience with breast cancer, how 25 years ago she found the same thing and calcs are a fore runner to breast cancer and yadda yadda yadda yadda. I tried to be polite to this totally unprofessional woman (who has been at the radiology practice there since I’ve been going there, so she obviously has a lot of experience and seniority there), but I finally had to ask her to stop with her lecturing of me, that I knew what was going on with my particular case and to quit trying to “fear” me. I tried to speak to her rationally, but she was clearly hysterical or using her own situation as a guideline to my situation.
She had no authority whatsoever to speak to me as she did. She was totally outside her professional ballpark and I can only imagine what she does to other women during the day. It makes me sick to my stomach to think about all the women she has created unnecessary hysteria and fear within. Maybe they keep her on staff as the “professional fearmonger”. I have no idea.
Anyway, she went away and came back several minutes later to let me know that the radiologist said the calcs were “stable” (duh….that’s what I had been trying to tell her), and to come back in 6 months. She then said, “well, I guess you aren’t going to come back in 6 months, are u?” I said, “No, I come back every 12 months and feel that 6 months is overkill in this situation.” She looked at me rather oddly, as if maybe…………….JUST MAYBE…I had planted a seed. That would be nice, huh?
I wish she had been more open to education and information, and I truly tried to do so in that brief time between arguing with her and trying to calm her down. I like to think my words and my example has some impact on her, although with her hardcore behavior, I doubt it.
So, that’s the latest. Going on 11 years now, NO BIOPSY, and none recommended this time. What will next year bring? Who knows? But so far, so good! I urge every woman reading this who has been automatically in knee jerk reaction told to get a biopsy for microcalcs to DO YOUR HOMEWORK, ask questions, don’t rush out the door in a panic into the biopsy suite or the surgical suite, and don’t let yourself be treated like sheep or cattle. I didn’t, and I”m very glad I didn’t!
I’m fully aware that next year’s mammo may show something different. And I told Miss Hysteria that as she was berating me. But I wanted her to realize that her approach was wrong, and that the “standard of care” regarding microcalcs in the U.S. is WRONG. This protocol needs to be revised to allow women a surveillance option. I am convinced that the thousands up thousands of unnecessary biopsies connected with microcalcs has literally kept the mammo industry alive and funded. At our expense and at the expense of our health.
It’s a scary thought and one that needs to be faced and discussed by the medical world. NOW!
Anyway, I will update again in 12 months and let you all know what (if anything) is happening with my microcalcs. btw, at one point, they had found calcs in BOTH breasts (left and right). Oddly, there hasn’t been another mention by them of the left sided calcs . Maybe they decided to drop it and not push it with a patient who is informed as I obviously am. Who knows?
Take care everyone, I follow this board every day, and my heart goes out to all of you who are fighting this information battle together. Hang in there, ask questions, and we will see improvements in care in the future!!
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So wonderful to hear your 10 year update and yet also very sad to know what horrible fear-mongering you had to endure! Sadly most women are not as informed and educated as you are and may succumb to the scare tactics and pressures. THIS is why we all must keep sharing….it takes a village of Wise, Informed, Supported & Empowered (WISE) women! Please help educate all women to have INFORMED CHOICE in mammography screening by sharing this “Be WISE” page: https://dcis411.com/bewise/ Many blessings for continued good health, strength, peace, light and love, Donna
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Donna, thank you so much for all you have done to bring the DCIS issue to the forefront. Without your leadership, I wouldn’t have known as much as I do, or had the courage to stand strong in my decision – a decision based on information instead of fear. I can’t express enough what your work and this site has meant to me over the years. Together, we will all play a vital role in making the changes that need to be made, so that other women will be spared unnecessary procedures, pain and expense. Thank you forever!
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Thank you so much for updating us. Because of your post, I feel empowered and hopeful about the future. It’s so important to play a very active role in our health and the decisions concerning our health. We have a voice and a place at the head of the table. No more making decisions out of fear. We have to do our research and gather the data to make the best decisions for ourselves. Cheers to you my Sister. Thanking God for health.
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latimiller,
thank you so much for your kind reply. It empowers ME to be strong and not run in fear when confronted with difficult situations. You, Donna Pinto, and every woman here who has come up against this issue of overtreatment, overdiagnosis, and lack of respect for patients are true HEROES to me! I promise to always follow up here and let everyone know what’s going on with my health. We are among those in the forefront of much-needed change and as you wonderfully say, we have a place at the head of the table! I wish you the best of health and happiness!
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Hi informedconsent2014,
Do you recall the major factor (morphology – amorphous? pleomorphic? and grouping) warranting a BI-RADS4 / biopsy for your calcifications?
Were there any associated simple cysts or benign masses around the areas that would/could likely yield greater probability of calcifications being benign?
Thank you for your update.
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Hi OwnYourHealth!
Thanks so much for your question. When I was originally recommended to get biopsy over 10 years ago, the radiology report indicated a “linear” pattern of the calcs. I think it also might have indicated “clustering”. That’s the only descriptions that have ever been used. Other than that, there were no other specific descriptions of the calcs that might have indicated malignancy. The radiology report has always been quite vague, which was another big reason why I resisted biopsy. Since that time, as per my 2021 update, there’s been little to no change in the calcs, and that’s why they decided it was most likely benign. As indicated from 2021, I will continue to follow the calcs and report in 2022 what the latest results are.
And no, there were never any other indicators surrounding the calcs such as cysts or any other findings which might have indicated it was or was not benign. . All I had to go on were these very vague descriptions of “linear” or “grouped”. For me, that was in no way specific enough or clear enough to have an invasive biopsy. I felt at that time, and still feel today, that unless there’s growth or very worriesome changes in the calcs (linear or whatever), that I am not going to have a biopsy. Just because calcs are linear (meaning they are potentially in a ductal line), doesn’t mean they are malignant. Benign calcs can be linear also. They never even got into any type of specifics of saying they were powdery or pleomorphic or any of the phrases you read about online. Unfortunately many times calcs are vaguely described, and on that basis, we are supposed to rush into a biopsy? No way! So, I hope this answers your question and I will definitely update as always this year as to the current findings. Good health to you and happy new year!
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Thank you informedconsent2014. I am with you. I am more comfortable with active surveillance for now, I seek to reduce benign biopsy rates for BIRADS 4A/B assessments through risk stratification and alternate, less invasive interventions. I have yet to find a breast surgeon who will answer my questions review all of my options so I (not they) can make and informed choice. SonoCine appears to be good alternative to Mammograms for detecting invasive cancers. Any thoughts on this? How about MRI’s?
You continue with annual screening w/ 3D digital mammography?
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I am very supportive of other forms of active surveillance such as MRI, etc. Unfortunately, not every type of health insurance will pay for these alternative ways of surveiling, so for now, yes, I do a yearly 3D mammogram. I would love to use some other format that doesn’t expose me to yearly radiation exposure, but for now, it’s the best I can do. But if you can utilize alternate methods for active aurvillance, definitely do it and reduce your radiation exposure.
Hopefully with more and more women educating themselves, we can take control of our own health and put an end to unnecessary biopsy procedures for microcalcs. It would be interesting to know the actual numbers of all the unnecessary biopsies performed for these small abnormalities. We probably will never know for sure, but I’m sure it’s a LOT! In my opinion, it’s all about money making by radiologists and surgeons. Our health comes last for these people!
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I have intermediate DCIS and sr are confusing me and one just want to cut me up due to
Gentic testing
I feel overwhelm and angry lol the option I have is cutting my breast up
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I I wanted to share my experience After being diagnosed In June 2018 with DCIS. (High Grade) In July I Had a lumpectomy and then an excision bro to have clear margins and then in November I had six weeks of radiation. When I initially met with the breast surgeon I was concerned because I had silicone breast implants. I asked her if they should come out or be swapped out The Dr advised me to just leave them. I think I had them in for eight years at that time. Then I met with the doctor that would be doing the radiation and also I met with an oncologist. I found it interesting that not one of them said anything about swapping out my implants. It was never mentioned to me about how the radiation would affect the implant. I was given a information in a looseleaf about what to expect from radiation. But nothing was mentioned about dealing with breast implants before radiation or for that matter after radiation. Fast forward one year and 8 months later. My right breast that was radiated has shrunk and has a deviate from the lumpectomy and has moved up. I find it uncomfortable and cosmetically looking unattractive.. I met with a Plastic Surgeon this week. I really have no good options at this point. As many of you know the radiated breast is difficult to operate on. My options are a mastectomy with reconstruction which I would then have a scar across my breast and have to my nipple removed with possible but not probable tattoo after a year It’s a pretty serious operation! Another option would be to have tissue taken from my back and placed in the breast. She said as far as surgery it’s not that easy an operation On a scale from 1 to 10 it’s a five. She also mentioned that cosmetically it would not be a good result. It’s also six week recovery time. When I left the doctors office I realized my best option is to just deal with the pain and not do anything at this point. Cosmetically it would look worse. The Dr told me if the implant could rupture at some point then I would have to deal with it but they may never rupture. I just know that I can’t just have them swapped out without going through a lot! It was like she was telling me I should’ve dealt with this before the radiation. However being naïve and not one of my three doctors addressing it I did what I was advised to do. The doctor wanted to know if they discussed my implants before my surgery Quite honestly no they did not other than to say leave them alone. I almost got the feeling that the doctor didn’t believe me. So I left there feeling defeated! It seems my best option is to do nothing at this point. Cosmetically I can live with it I guess but I will worry as they get older Or if the discomfort gets to be too much. I’m at 10 years now. Down the road I’ll have to maybe deal with it at some point. I just wish I had been giving better advice! My hope is that other women that read my story will understand to take their time do the research and realize that they have other options. DCIS was so very confusing!
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Hi Carole,
So sorry you had to go through this. Maybe you can contact the show “Botched” Dr Nassif and Dr Dubrow have reconstructed numerous breasts with deformities.
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Hi Donna
I have just been diagnosed with intermediate-high dcis. The treatment will either be a lumpectomy plus radiotherapy or a masectomy, to be decided after an mri in 2 weeks time.
However, I feel quite strongly that the treatment is probably unnecessary.
I have very small, dense breasts which grew rapidly when I became pregnant aged 23, then diminished quickly following a termination. Could this be the reason for abnormal cells in my breast?
How is the grade of a dcis decided? Is it by size ie the area of the abnormal cells or the look of an individual cell?
I have been scared by this but mainly I feel angry because on the one hand I doubt this will turn into breast cancer but fear makes me go ‘but should I do it just to be on the safe side?’
I will very likely get & die from throat and or lung cancer because all my close relatives have died from it, I grew up in a household full of second hand smoke, smoked myself & have lived in an area of London with a high level of air pollution for over 20 years! I feel that irrespective of what treatment I do or don’t have to my breast, it’s not going to prevent me getting fatal lung and throat cancer.
Other than smoking 20 years ago, I am healthy, slim, eat a pescatarian ovo lacto mediterranean diet & drink very moderately.
As you can probably tell, I live in the UK & our national health service, while being good in many ways, seems to have a ‘one size fits all’ attitude to this – chop it out or chop it off & blast it with radiotherapy.
Reading through the postings here it does seem the US doctors do provide their patients with more information.
My cancer nurse at my hospital is nice & helpful but it feels impossible to get detailed information so I can decide for or against treatment & surgery.
It would be great to know what questions I should be asking to get the info I need.
Many thanks in advance – finding your page & story has been a lifeline
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Hi Lulabel, I would suggest getting a 2nd PATHOLOGY opinion. This is a Dr that looks under the microscope at the cells. Best to have someone who is not associated with the 1st hospital. I am not sure if this is possible in the UK, but you could call PreludeDx and ask them if they could help you or refer you to someone in the UK https://preludedx.com/breast-sos/
You could also email Dr. Laura Esserman and ask her if she has recommendations in UK. https://breastcaresurgery.ucsf.edu/faculty/breast-care-surgeons/laura-j-esserman,-md,-mba.aspx
I am happy my site has helped. You can also email me: dp4peace@yahoo.com
Keep listening to your gut!!
Many blessings,
Donna
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Hi Donna,
I’m also from UK and feeling that I’m being pressurised into unnecessary operation within 2 weeks.
Waiting for your reply to Lulabel question. Thanks
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Hi Auriel. Please see my reply to Lulabel. Take time to get more info…2nd PATHOLGY opinion and DCISionRT are both important before making any decisions!! Here is everything I suggest: https://dcis411.com/resources/. Please let me know if you have more specific questions. My email: dp4peace@yahoo.com.
Many blessings,
Donna
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I just had a breast biopsy today for suspicious calcifications BiRads 4b. When I asked the radiologist if Penn Medicine does “active surveillance” for DCIS she said “no” and that she’d never heard of it. I’m like ok the JAMA study has been out since 2015 & women deserve to know ALL of their treatment options. Maybe she doesn’t know because that’s not her area of expertise. I hope that my results come back benign but if they don’t I will be working with a DCIS literate doctor.
Your website has been very helpful! Thank you!
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Unfortunately many DCIS doctors are not going to advise active surveillance because in my opinion there is no money in it. I was diagnosed 2 years ago with high grade DCIS I am getting ultrasounds every six months I am never having another mammogram because I have dense breasts. If a tumor shows up I will have ablation, where they insert a needle in the tumor and microwave or freeze it. Cancer is a state of mind once you have a plan it is not scary. I am not taking poison drugs like tamoxifen I am taking more HRT and I feel great!
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I was diagnosed in june of this year with dcis grade 2/3 . I chose to postpone surgery and instead change my diet, lose weight and walk every day. Of course the doctor tried to scare me but I’m a very laid backed, non stressful person. My only concern is at times I question my choice because of it being a grade 2/3. Most research I’ve read say it’s ok to watch and wait with grade 1 but not grade 3. Because of things I’ve read, I’m second quessing my choice.
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Did you get 2nd pathology opinion and DCISionRT?
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For your peace of mind get ultrasounds every six months and if a tumor is there it is only six months old or less and very treatable. Last year I met a woman who had a stage 1 breast.tumor, a real diagnosis of cancer, not DCIS maybe it will become cancerous, she went to City of Hope and in 45 minutes they froze her tumor and she is cancer free no suggestion of mastectomy, poison drugs, radiation etc. No bullying! Your gut is right that is why you have taken your time and you are on this blog researching don’t second guess yourself you know your body better than any doctor!
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How can i subscribe to your newsletter?
I’m off social media
I just was diagnosed with DCIS stage 0, i just had a lumpectomy and am refusing additional treatment. My doctor finally admitted that my chances of recurrence is as follows:
“94% per year you will never get it back and added, but some women can’t handle that and need to know they took all the treatment possible to feel better and relieved.”
Women must be more courageous and face it as it is, fear blinds us and these doctors know well how to play with us physiologically.
Faith and discernment is a must as well.
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Thank you for your comments and insights. 🙏
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Hello, I am 40 years old, I was diagnosed with DCIS 0, low grade, 4 mm. I had in Germany two lumpectomies with clear margins. They recommended me RT because of my age and dense breast…
In 2 days I have to decide! It’s so hard! My intuition said no and all of my doctors said yes!
Wishing you all the best and all the heath from entire universe!
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Just diagnosed and am scared to death.. DCIS grade 2 in 3 areas of the left breast… contemplating mastectomy in the hope of warding off cancer becoming invasive.. My mind is spinning and my anxiety is through the roof.
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Do you have a family history of breast cancer? Unless that or something else has motivated your doctors, I believe it really is your decision.
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Hello, I am 40 years old, I was diagnosed with DCIS 0, low grade, 4 mm. I had in Germany two lumpectomies with clear margins. They recommended me RT because of my age and dense breast…
In 2 days I have to decide! It’s so hard! My intuition said no and all of my doctors said yes!
Wishing you all the best and all the heath from entire universe!
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Hello Donna and everyone!
Well, it’s that time again…time for my ongoing (now11 year) update about my microcalcs. It is now May 2022, and I just had my mammogram. For those who have been following my saga, back in 2011 I was told to get a biopsy on a grouping of microcalcs, I luckily found DCIS411 and did a lot of research which led me to refuse the biopsy and opt for a watchful approach. I endured a lot of pressure from various medical people, but stuck to my gut feeling on this and didn’t cave in. I come here every year and check in with the latest on my case so that you all can see the current findings.
As usual, I was basically harassed by the same mammography tech who did the test last year. And as usual, I explained to her (as I did last year), my approach for over 10 years and why I have refused the biopsy. If I run into her again next year, I will print out a lot of pages from DCIS411 so she can finally educate herself and bring herself into the 21st century about microcalcifications! Problem solved! Or better yet just give her the website address so she can read to her heart’s content! Maybe then she’ll stop aggravating patients with her unnecessary fear mongering! (and the crazy thing is, this woman is NOT a doctor, not a radiologist, just a technician, yet she thinks she has some sort of special job title where she can harass patients with her personal recommendations!) I’m sure we’ve all unfortunately run into this type before!
Anyway, this year the radiology report downgraded the Birads score yet again to Birads2, stated that the microcalcs were “stable”, no biopsy recommended, and only routine mammogram for next year. So, this is good news and certainly helps once again to prove to all these medical “professionals” that my approach has been correct. If I had followed the fear factor recommendations from years past, I probably would have been having biopsies in BOTH breasts on multiple occasions, but I thankfully did my homework, pushed back on the microcalc insanity in the U.S.A. and saved myself a lot of physical pain from invasive procedures as well as a lot of emotional pain and maybe very unnecessary lumpectomies, radiation and god knows what else! So, I am very pleased with my approach.
I will check in again next year and let you all know the findings. We know that things can change, or something else might be found in future. BUT…….I believe I have awakened a few people to the insanity of having a knee jerk reaction to biopsy recommendations when a few microcalcs are found. Watchful waiting as far as I am concerned is definitely an option. Please please do your personal homework before jumping into biopsy of microcalcs. That is my advice! (i am now 66 years old, no history of breast cancer in my family). At the end of the day, it is YOUR body, and you need to make informed decisions. Take care everyone, and once again, thank God for Donna Pinto….an angel on earth who has been a trailblazer in this area! Hugs to all!
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Love that you check in here and report on your status every year! It is sooooooo amazing to hear how you have followed your instincts and continued to push back and stay the course. Thank you for being a trailblazer — and thank you so much for your kind words and appreciation of me, DCIS 411 and all my efforts. More and more women are joining us in this movement for informed consent and informed choice. May we all be continually blessed and may we we all keep on shining the light together! Much love, Donna
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This dx turned my life upside down for sure. Same dx DCIS stage zero and I got conflicted information. I unfortunately did the biopsy which I know after research was the reason 2 years after biopsy I noticed a lump.
I was being pushed, bullied and scared into having surgery, radiation and hormone therapy. They tried it but it didn’t work!
They even tried to tell me not to wait long since I said I had to think. I was even told was sites to research on the internet.
Cancer is big money and from my research there are so many alternatives.
Im sad for all these women going through this and taking extreme action due to fear, bullying and misinformation.
We women need to definitely take back our power and stand firm on own own beliefs, feelings and ways we want to be treated medically. We shouldn’t be ridiculed for the decisions we make about our own health and body.
Holistic medicine should go hand and hand with mainstream medicine.
Women please do your own research! Just breathe, take time to decide what you want to do despite what everyone else is telling you. Go with your gut feeling.
There are so many women healing their bodies the natural way and thriving.
Sending peace, love, light and healing vibes to all.
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So. Is grade 3 DCIS more likely to progress to invasive cancer??
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“Grade 3” isn’t always accurate. I would suggest a 2nd pathology opinion and DCISionRT to test for other bio-markers. See FAQ page
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Was told that I have DCIS. 6.3 cm in size. My breast is 34 B. As a result a mastectomy was advised. Undecided. Please help…..
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What grade DCIS? Look at FAQ page!
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Hello Dear,Thanks for reaching out.It is DCIS, Nuclear grade 2,with necrosis. I was told to take the complete breast off.
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Grade 2 is also considered LOW-RISK. I too was told to remove my breast in 2011. Thankfully I did not listen to those doctors! Please see my blog post: https://dcis411.com/2021/04/11/my-doctor-told-me-your-breast-is-like-spoiled-soup-its-not-worth-saving-ten-years-later-evidence-i-proved-her-wrong/
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Hi Donna, Thanks aga
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Has anyone gone to an Integrative Oncologist who does the GRCC cancer test? I wished I had not had it done! Now am totally confused and very concerned. They supposedly can get a circulating tumor count. Mine was supposedly 2.3, 0 is best but over 5 is bad. The onco wanted to go ahead and start me on low dose chemo!!! I freaked out. Said if that is the case I wld just go and have a nipple sparing BMX! My pathology report from my reduction was DCIS intermediate grade, cribiform with some necrosis and microcalcifications, discovered incidentally with my breast reduction 2/6/23. I had a clear mammogram prior to reduction surgery. The DCIS was in the 9 0’clock position of rt breast. My PS marked the “biopsy” she took out of that area, as it looked suspicious. No borders were defined though, even though she marked the edges in purple ink. The DCIS was 3mm in 2 foci. I also have lobular hyperplasia in left breast and also in the rt breast with the DCIS. I am now on a Paleo diet and starving, depressed, taking enough supplements to open my own vitamin store, doing hyperbaric and energy treatments, IV Vit C and others. Also, had a positive Lyme test! Taking stuff for that. Have been told my root canals cld be leaking toxins into my lymphatic into breasts. I am having trouble sleeping and barely managing to get through my days. I am praying a lot. I am trying to get into a Breast Center in New Orleans. Have a friend who had a good experience there. I am leaning towards a nipple sparing double mastectomy, since there is no way to no if something was left behind and also the imaging for breasts cancer is still in the dark ages. No way to know. Also, refused MRI due to the gadolinium heavy metal dye they use that deposits in organs, plus I am allergic to metals. Mammo missed it to begin with and was told an US wld not be of help. The Onco wanted to do a PET scan, that is so much radiation, refused that too., I need any advice,if anyone has any. Thank you all for posting your journey. This site has been very helpful, Donna.
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Hi Susan,
Have you read Nancy Riopel’s story? https://dcis411.com/2019/09/20/the-importance-of-being-informed-treated-with-compassion-and-advocating-for-active-surveillance-nancy-riopels-enlightening-dcis-story/
I have been on a whole food plant-based diet for 13+ years and I eat when I am hungry. I have maintained same ideal weight entire time. Some of my favorite recipes are here: https://givewellness.life/recipes-for-wellness/
Good you are going to a new center. I had the root canal freak out as well. Went to a holistic dentist and had one repaired and got rif of silver filling. Important to take things slowly and remain calm. A decision made in fear is not good. Sending love and blessings. xo Donna
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Thank you Donna. Trying to not freak out. I did read Nancy’s story. She is an amazing self-advocate. This test the integrative Oncologist did is what has me unsettled. It counts circulating tumor cells in the blood. my results were 2.6 tumor cells per 7.5mls of blood, for Breast “C” if above 5 it is not good. It should be zero. They wanted me to go ahead and start on low dose chemo infusions plus natural IV infusions, and an aromatase inhibitor. I said no to both! My husband and I have seen conflicting reports of its accuracy of the CTC test, and usefulness. I am missing having pasta all along for sure with the Paleo diet. I am small 5’2″ and 115 pounds have always eaten healthy, just not on a strict diet. Had very heavy breasts for my size, thus the reduction surgery. I am a healthy 62 yo. Blessings and love to you too. So thankful for this blog.
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Hi Susan! If it were me, and this type of finding was discovered “incidentally” during a breast reduction, I would not allow myself to be rushed into any major decisions whatsoever. I would take a repeat mammogram in six months and see what it showed. You said that prior to reduction, you had a clear mammogram. This means that without the reduction, you wouldn’t be recommended all this drastic stuff. If the six month mammo doesn’t show anything, I would wait and do another six month and take it from there. And as for that test showing circulating tumor cells, I’ve never heard of that test and have no idea about the validity of it. If you truly feel freaked out, then get a second opinion from a breast specialist in California at USC who is familiar with over treatment and overdiagnosis of DCIS and other breast issues. I am not a doctor, just a person who has gone thru being harassed into having a biopsy for a few microcalcs. I refused the biopsy (that was over 10 years ago), and was finally told that most likely the microcalcs were BENIGN and could be watched with yearly mammos, and that’s what I’ve done. I doubt you are at risk for immediate health catastrophe if you do another six month mammo and don’t jump into any of these extreme measures they are pushing for. This is their game! That is why women are being so maimed unnecessarily by a lot of over reactions. Naturally, you can do what you want about this, but from what I have gone thru and experienced, and as Donna has gone thru, watchful waiting is at least a much better alternative than being feared into major decisions without proper information. That’s my personal take on this! Good luck and let us know how it all went!
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Hi Donna!
As always I do my yearly update on my mammogram results. For those who are new here, a routine mammogram over 10 years ago picked up a small cluster of microcalcs and a biopsy was recommended. I was lucky enough to find DCIS 411 and decided not to agree to the biopsy and just do routine yearly mammograms to see if anything changed on the microcalcs. I put up with another 8 years or so of being told to get a biopsy and continued to refuse! Finally the last couple of mammograms the radiologist finally declared that the calcs were most likely BENIGN and no biopsy recommended. I was finally vindicated! So, I just had my yearly mammogram for 2023 and the findings were once again benign, no biopsy or anything recommended other than routine mammogram. The tech who did the mammogram said that certainly after more than 10 years of watching these calcs with no change, it wasn’t cancer. I told her that I once again felt vindicated for not caving in to a biopsy just because a small cluster of calcs was found. She seemed a little rude about it and didn’t exactly seem warm towards me….maybe they are ashamed of the way women are pressured over certain findings. I don’t know. But all I know is that I stood my ground during some very heavy pressure over these calcs, from my own doctor, from the various techs I dealt with getting these mammograms, not to mention terrible stress over it. But I knew I was doing the right thing and not going like a sheep into an invasion, painful or expensive procedure like a biopsy. And it wasn’t just the biopsy I avoided, but potentially MORE unnecessary treatments based on a biopsy that may or may not even be read correctly. Thus putting me at risk for more overtreatment, pain, medications or who knows?
So, the moral of the story here is: question question question, particularly when it comes to an initial mammogram finding of a grouping of mircocalcs. Women need to start demanding accountabliity from radiologists and the radiology profession, and realize that there IS support out here from people who have been through this stuff and don’t jump through these hoops just because some medical person demanded it. Our health, our bodies! Thank you again as always Donna for saving me from doing something I knew wasn’t right! I will update again next year! Stay healthy and stay INFORMED everybody!
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Wonderful wonderful wonderful!!! Truly happy for you and thank you for always taking the time to write up your findings and feelings. If only more women could avoid the unnecessary biopsies and surgeries! You are certainly helping to show there is another way other than fear! Many blessings for continued excellent health and happiness. 🙂 Donna
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Hey Donna!
I just joined your groups and started reading this page. It is very helpful. This past week I was diagnosed with intermediate grade apocrine DCIS, ER+ and I have been scared, anxious, and nervous because this is new and I don’t know what to do. I would love to get over this naturally, but I haven’t had my follow-up appointment from the pathology findings yet. It’s about 4.4cm of cluster calclifications in my upper left breast and I’m nervous how my breast will look if I have a lumpectomy. I know for sure that I don’t want to take Tamoxifen because of the side effects and I want to have kids. I would love your thoughts on any test I should ask for that could help me make my decision. If I were to wait on surgery, do you think it would progress fast? I am going to also see a naturopathic doctor.
Your website is helpful. Thank you.
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I was diagnosed with DCIS grade 0 stage 2 after having a biopsy surgeon preformed a lumpectomy all margins clear , she also did the DecisionRT test that came back high at 9.2 she said that she had seen a 9.6 and that you don’t get a 10 and if it comes back it will probably be nasty so she said I need radiation and 5 years of pills or a mastectomy, my mind is made up for no radiation or pills , don’t know about the mastectomy but am uncertain on what to do any advice would be appreciated. Thank you ps I am also 72 years old but active and in pretty good shape.
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Sorry for the delay in posting your comment. Radiation comes with harms which must be weighed against benefits. Although radiotherapy is associated with substantial reductions in local recurrence, no differences have been reported in metastatic disease or overall survival. See more info here: https://dcis411.com/2018/04/23/evaluating-dcis-treatments-do-you-know-your-survival-statistics/
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Do not allow radiotherapy. It destroys the remaining marginal breast tissue, which contains defensive hormonal and metabolic reactions inhibiting local recurrance. Do not allow either mastectomy or prescription of antiestrogenic pills. They are more dangerous as compared with lumpectomy with thin margins.
Causal Therapy of Breast Cancer Irrelevant of Age, Tumor Stage and ER-Status: Stimulation of Estrogen Signaling Coupled With Breast Conserving Surgery*
Author(s): Zsuzsanna Suba
Volume 11, Issue 3, 2016
Page: [254 – 266]Pages: 13
DOI: 10.2174/1574892811666160415160211
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Thank you Dr. Suba 🙏
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Question: why do doctors claim studies show 50% reduction in recurrence of DCIS or future invasive cancer with radiation? But they also often fail to tell women: studies show no survival benefit from radiation.
Thank you,
Donna
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Radiation aggressively kills cancer cells, but the reduction of DCIS rcurrence after radiation is not true. In my article, you can find the worse results of X-ray treated patients as compared with those without radiation. Explanation: Cancer cell is not an enemy to be killed like microbes, but rather an ill human cell with deteriorated genetic regulation. The initiator of cancer is a mistake in the genomic machinery. Cancer cell tries to fight against this mistake by its remaining regulatory mechanisms, but it is not successful attributed to the inadequte, aggressive killer therapies. After surgery, radiation is absolutely harmful for the remaining breast tisssue. Postoperative “recurrence” of breast cancer may not be attributed to residual hidden cancer cells, but rather the unrepaired genomic damage of breast tissue is repeatedly the source of newly initiated tumor. Please, kindly open, tweet and share my publications!
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I just turned 40 and obediently had my first mammogram, then a follow-up mammogram and ultrasound of a suspicious area in my left breast. I have a “mass” and “a cluster of microcalcifications.” BIRADS 4. As a first step, she recommended a stereotactic biopsy. I can’t decide whether to do it. About five years ago, I had the same area biopsied (ultrasound guided, I refused mammogram at the time to avoid exposure). Now they want to biopsy “just a little above” the old biopsy site. They said they can’t tell if the original doctors under-reported the size or if it’s grown. I’ve read a lot of comments on here from people using the wait-and-see approach with microcalcifications, but does the “mass” make this a more serious situation? I’m very new to this world and trying my hardest to not panic and sign up for unnecessary, expensive, damaging treatments. But I also don’t want to ignore a real problem. Any wisdom you could share would be wonderful!
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I would highly recommend getting an ABUS and/or 2nd opinion review of imaging with Dr. Meghna Krishnan:
https://www.3dbreastultrasound.com/second-opinion-reads.html
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Hi K,
Sorry for the delayed reply. Have you done anything further? I would recomend a 2nd opinion review of imaging from Dr. Meghna Krihnan: https://www.3dbreastultrasound.com/second-opinion-reads.html
Best wishes and please keep us updated! Donna
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Hi Donna, thanks so much for telling me about Dr. Krihnan. We’re in the middle of getting my images released from the hospital here so that she can review them. 🤞🏻
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awesome! Please let me know how it goes! Donna
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Hi Donna,
Dr. Krishnan seemed a little uncertain at first but ultimately recommended a biopsy. She is concerned about the irregular shape of the mass and the fact that it’s pulling/wrinkling the surrounding tissues. At the same time, she said it may just be fibrocystic tissue, which I clearly have elsewhere. Apparently the area of concern wasn’t visible on the ultrasound images, which makes me confused about what my original doctor was trying to show me on the ultrasound. Dr. Krishnan said I could do an MRI, but that it would likely still result in a recommendation for biopsy.
There are definitely things about this process that I don’t understand. The impression I got from Dr. Krishnan is that biopsy is the only way to know for sure whether it’s invasive or to know what stage of DCIS it is. When women decline biopsy, are they choosing to not get a diagnosis and if so, what are they looking for in follow-up mammograms that would trigger them to change their mind and do a biopsy after all?
Right now, I’m feeling like I’d better do the biopsy…
Thanks!
K
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Thank you K for your comment and question. I would think if whatever is seen on imaging is growing or changing or if it look INVASIVE, that would be a reason to potentially have a biopsy. This was the case for me in 2011 (scared it could be now INVASIVE), however, after sugery, it was still LOW grade DCIS…maybe it grew i size due to the 2 biopsies (i needle and 1 surgical) 18 months earlier??? Never changed to INVASIVE after 14 yrs of monitoring with MRI then SonoCine or automated ultrasound.
We all have to weigh the pros and cons of imaging and biopsies as we navigate challenging personal and unique situations. Wishing you peace in this decision-making process and please keep us posted!! xo, Donna
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Hi K,
I’m one of the people on the site who refused biopsy back in 2011 when a small grouping of microcalcs was found. I decided to watch and see if these calcs ever grew or changed which was stressful but I felt worth it to avoid an unnecessary biopsy. Every year they kept pushing me to have a biopsy, even though the yearly mammogram screening never showed any change. Finally last year the radiologist finally had to admit that because there had been no change in over 10 years of monitoring, no biopsy was recommended due to it being benign (no change, no growth). To answer your question about what would have caused me to have a biopsy – if the yearly mammogram had shown a change (and it would have had to be measurable, not just some minor unproven change that they couldn’t demonstrate to me), then I would have had a biopsy. So, for me anyway, if there had been significant, measurable growth, that would have been an indicator of it possibly being something more serious. I had to cope with 10 very stressful years of being told, year after year, to have a biopsy, always being rated BIRADS4. But I never saw any indicator that these calcs had changed or grown. So I felt on solid ground to refuse the biopsy
I never had a mass so anything beyond the microcalcs. I also never had anything beyond diagnostic mammograms – no MRI or other types of screening.
In your case, as Donna says, all you can do is what you feel is best for you. If you feel comfortable with watching the abnormality for a year or even just six months to see if things change, that would be your decision. If you decide to have the biopsy, always bear in mind that the biopsy can trigger off a series of further medical recommendations such as lumpectomy, radiation, or even more. That’s a big reason I didn’t feel comfortable about having a biopsy because I knew it could create further invasive procedures. At least you are educating yourself and asking questions, getting second opinions, etc. And that’s so great! Whatever you decide, you will go into it with more information than many women have. You ask questions and demand answers. This is not a one size fits all situation for any of us. The main thing is to have informed decision making. Hang in there, let us know what you decide and what the outcome is. Sending positive thoughts your way!
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Thank you so much, Donna!
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I was diagnosed with DCIS in 2021 after getting a stereotactic biopsy which left my left breast swollen and seriously bruised. After the diagnosis I was encouraged to have a lumpectomy right away. They didn’t even want to wait for the bruising or the swelling to go down. This made me very anxious and I agreed to schedule the lumpectomy immediately. When the xray techs were trying to set the guide wires before surgery they had trouble getting a clear image because of the hematoma. This lead to what felt like was an enormous number of xrays in an attempt to get a clear view. I had the thought that if I didn’t have cancer yet all of the radiation I was being exposed to might just bring it on. I researched quite a bit online after the surgery and decided that because I was post-menopausal, low risk and ER receptor postive, I would decline radiation. If I had it to do over again, I would have taken a wait and see approach to any changes to my baseline mammograms and would have declined even the biopsy. I had a video meeting with my “oncologist” shortly after the surgery. He had a very somber tone suggestive of a funeral director. It was all so very strange. “Standard of care” was something I heard quite a bit throughout the whole process. I appreciate what you are doing here, Donna. I hope more women in this situtation find this information and feel empowered to set their own standard of care.
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Hello,
Thank you for this much needed resource!
Bella
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Thank you !!! So is high grade considered “ closer to cancer?” I’m scheduled for a lumpectomy in a few weeks. Hope I’m making the intelligent choice.
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You may want to get a 2nd pathology opinion before making any decisions. See FAQ page
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I’ve been having itch in the nipple breast I had dcis low type and I read about Paget’s disease and how it could come if you had dcis panicking scared to death thank you Donna
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sorry for the delay. I was on vacation. Hope you are doing well Ann and no longer in a state of panic!! Please spend time reviewing my HOLISTIC HEALTH page. Hugs, Donna
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Have not been on here in a while. I had small DCIS intermediate grade in 2 blocks found during a breast reduction 2/23, also, both breasts with wide spread lobular hyperplasia. Being that I personally know many women who died of breast cancer, I decided to have a double mastectomy with immediate SGAP flap reconstruction at a great holistic breast center in New Orleans. The pathology came back from ALL the breast tissue removed, more DCIS found in the rt breast and sentinel node was neg. However; the left breast had a 4mm invasive lobular carcinoma, along with wide spread hyperplasia. So a week after my mastectomy and reconstruction, I had axillary lymph nodes removed from the left side where the invasive lobular was found. Those were negative, thankfully. The thing about Invasive Lobular cancer is that it does not grow in a lump but spreads out like a spider web. It is usually Not found until it is in several lymph nodes or metastasized. So in my case the DCIS that was found during a breast reduction was the catalyst for my ILC, stage 1, grade 1, being found before it had spread to the the lymph nodes. My pre-reduction mammogram showed nothing! Was clear. I went with my gut and put my retired “nurse’s cap” on and prayed hard. My husband and I chose the Double Mastectomy/imediate reconstruction with autologous fat flaps. I am 63, small, active and healthy otherwise. I am refusing the aromatase inhibitors, my medical oncologist is not happy about that. The side effects of those hormone blockers would definitely be a Quality of Life detriment. I am on a cancer prevention diet and many supplements. This has really been very hard to deal with emotionally as well as physically. I am concerned for my daughters in their 30s. I am Not BRACA +, but it seems so many women with invasive being found, not just DCIS. I know several young women in their 40s, with IDC.
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So sorry to hear all that you have been through Susan. Your story is quite unique with DCIS — only about 4% have a cancer found in opposite breast. I did not know about the spider web growth of lobular cancer so thank you for alerting women to this. And that it was not seen on mammogram!! This is one of the reasons women need to demand better, safer, more accurate imaging. It’s the invasive cancers that are often missed on mammography. Most women do not know this. I created a petition for women to have automated ultrasound (ABUS) and the new QT Imaging as stand-alone and covered by insurance!
INFORMED CHOICE in Breast Cancer Screening / Insurance for Ultrasound and QT Imaging: https://www.change.org/p/informed-choice-in-breast-cancer-screening-insurance-for-ultrasound-and-qt-imaging
Finding early cancer does not mean conventional treatment is right for everyone. Some may choose to heal 100% naturally and many are in fact doing this and there are amazing alternative cancer groups sharing insights on this. Good you are now on a “prevention diet.” Young women need to be aware of food as medicine as well as reducing toxins in all the ways I have outlined on my HOLISTIC HEALTH page. https://dcis411.com/holistic-health/
Hugs and best wishes for healing and staying healthy!!
Donna
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For anyone reading this, please see:
Causal Therapy of Breast Cancer Irrelevant of Age, Tumor Stage and
ER-Status: Stimulation of Estrogen Signaling Coupled With Breast
Conserving Surgery
Zsuzsanna Suba*
“In patients treated with in situ breast cancer, the recurrence-rate of invasive tumor increased directly with ageing irrespective of tumor size or ER-status at diagnosis. Women who underwent lumpectomy without adjuvant radiation or chemotherapy exhibited significantly better overall and breast cancer specific survival rates than those receiving mastectomy, regardless of stage and ER-status of tumors. Antiestrogen treatment exhibited unforeseeable effectiveness even on targeted ER-positive tumors.
Recent patents propose the detection of ESR1-gene amplification or restoration of ER-alpha expression for prediction of effective antiestrogen treatment, suggesting a crucial inhibitory role of estrogen-signaling against tumor-growth.Conclusion
Estradiol-induced upregulation of estrogen signaling coupled with sparing of the estrogen-rich mammary fatpad are the most effective strategies against breast cancer.”
Thank you Dr. Suba! – Donna
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thank you Donna for starting this blog/group. I was diagnosed with dcis stage 0 last yr and had lumpectomy on both breast in Sept 2023 and chose not to have radiation but was given tamoxifen 10 mg. after 6 month the mammogram & biopsy showed cancer again as DCIS grade 2 on one breast and the dr said she sees on images more than one ducts. She has suggested mastectomy and then said to do double mastectomy and rushed me to see a plastic surgeon. I canceled the appointment and waiting to see 2 other surgeons for 2nd and 3rd opinion. Since last year diagnosis I had started following Chris Warks diet suggestions and have been on 95% veg diet and juicing and completely eliminated added sugar in my diet. Can you please advise me what I should do ..? Trusting God ..
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Hi Puja, Sorry for the delay. I was on vacation. I think you are on the right track following Chris Wark diet/lifestyle program. I did the same! Please see my HOLISTIC HEALTH page as well as FAQ. xoxo Donna
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