DCIS Decision-Making — What Makes Us Different?

choicesWhy is it that a majority of women diagnosed with DCIS choose the path of “standard” aggressive treatment (mastectomy or lumpectomy plus weeks of radiation and years of “prevention” drugs), while a small minority say “NO WAY — this is OVER-TREATMENT?”

  1. Is it fear of invasive breast cancer and potential early death?
  2. Is it a calculation, a score from a test, a marker or a decision aid?
  3. Is it a belief or disbelief in the medical system and the cancer-care industry?
  4. Is it a feeling of no other choice?
  5. Is it pressure or bias from a medical professional?
  6. Is it a gut feeling?
  7. Is it an empowered feeling based on scientific evidence?
  8. Is it a desire to be over and done with it and get on with one’s life?
  9. Is it some or all of the above?
  10. Is it something else?

What is it for you?

Please leave a reply below if you feel like sharing how you came to your treatment decisions. Thank you!

 

About dp4peace

I was born and raised in New Jersey and moved to the San Fernando Valley of Los Angeles when I was 12. I graduated with a BA in Journalism/Advertising from San Diego State University. After a short stint in magazine ad sales in LA, I was offered my dream job working for Club Med. I spent two years working at resorts in Mexico, The Bahamas, The Dominican Republic and Colorado. My husband Glenn & I met while working at Club Med in Ixtapa, Mexico. We returned to "real life/jobs" for three years before we embarked on a two year honeymoon around the world. Together we wrote a book called "When The Travel Bug Bites: Creative Ways to Earn, Save and Stay Abroad." I am also the author of "Cheatnotes on Life: Lessons From The Classroom of Life," a quote book for new graduates. Glenn & I live in San Diego with our two boys: Skyler, the yogi and Cody, the buddha! I enjoy running, yoga and working on projects that bring more peace, health and light to our world.
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21 Responses to DCIS Decision-Making — What Makes Us Different?

  1. Gay says:

    For me it was just get it done and live my life. I had a lumpectomy and radiation. It was a difficult time in my life. At the time my granddaughter just had a heart transplant. A transplant is not a cure. She is on medication which harms her organs for life. Her life expectancy is only 10 to 15 years. She could die before I do. I didn’t want my family to go through anything more. I also had a grandson her died 2 years previously. That was 4 years ago. My granddaughter is doing well although her future is uncertain. I have resisted other treatments such as hormones. Recently a young surgeon wanted me to have a MRI. I didn’t do that, but I’ve been nervous since. It is not an easy path.

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  2. Connie Selby says:

    The first time, I just followed what my cousin once removed did. Her invasive cancer was found 3 months before my DCIS was. Her husband, a doctor I highly respect, found the best surgeon and radiologist. I went to the same ones. I also got better answers from my cousin’s husband/doctor! The decision to stop taking Tamoxifen was made on the side effects to my uterus and the fact that’s”it was only DCIS”. I was somewhat nervous because the grade of my DCIS was “high” (aggressive) and there was some DCIS in the margin but not AT the margin. However, when the recurrence happened 6 years later, I knew surgery was necessary to remove it. However, I asked for, and based my decision to refuse radiation on, the Oncotype DX test. My decision to start Anastrozole on 1/1/16 was based on the fact that my DCIS was intermediate grade (not “low”) this time and that, despite cutting and burning 6 years prior, these cells survived. If it returns again, I’ll take a wait and see approach, and another lumpectomy if necessary.

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  3. litlady1 says:

    Several years ago I was diagnosed with DCIS and analyzed my tests and tissue samples. I’ve decided to do nothing except change my diet and lifestyle. I feel great and secure in my decision. I did extensive research. What I hated about the whole thing was the doctors and there fear-monger ing. I now have a doctor who understands my decision.

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    • MariaNYC says:

      HI Litlady1 – I’m Maria – glad to read your story. I’m wondering where you live? What grade were you? I’m six months into my diagnosis Left Breast High Grade 9cm ER+ PR+ I’m trying to avoid ANY surgery and radiation and tamoxifen. I’m seeking support. I tried to change my diet the first six months and BOOM WAKE UP CALL #2 I am not good at keeping diets. Obviously WAKE UP CALL #1 DCIS! So I’m hoping that I still have time to radically try alternative therapies. The 10%-15% chance that I have invasive and they need to cut a big part of my boob to check all the tissue. I’m not convinced but I’m also not healthy – my DCIS calcifications MAY have increased – I’ll find out tomorrow from an Oncologist I don’t really like but maybe he’ll monitor me. Thanks for your post. It helped!

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      • Connie says:

        I’ve always had big scattered calcifications since my first mammogram at age 50. But they said they were nothing to worry about. I was 9 mm DCIS high grade, ER/PR positive in 2009 at age 59, before I knew much about watchful waiting. I had surgery but there was some DCIS close (not in) to a margin, even though the DCIS was not seen to be extensive or multifocal. I had brachytherapy radiation and 1.5 years on Tamoxifen until it affected my uterus adversely. I ate better after that but probably still too much sugar because I love chocolate. More exercise but probably not enough. Fast forward through that to 2015. Another location of microcalcifications, 13 cm. Because my first DCIS was high grade I had these new ones biopsied (not fun and not something you WANT to do). They were intermediate grade and even more highly ER/PR positive. I had them surgically removed, plus the necrosed tissue from the radiation (it hurt for those 6 years). I had big breasts so there was enough to do this second lumpectomy by the way. But that breast needed plastic surgery to close it up because it would have been quite misshapen as you can imagine. Dr. Liu at Cancer Treatment Centers of America, Illinois, was my fantastic PS. I was waiting until after radiation to have the other large breast reduced to match. However, I had heard that there was a genetic test to see if my DCIS would need radiation so I asked my oncologist to have that done (they do it on the biopsy tissue). Turns out I would have had very little (11%) benefit from radiation, and having radiation probably would have left that breast with very little living tissue, so I skipped rads this time around. I am however taking Anastrozole for 5 years I hope. Just finished my first year. I have done all this, knowing there is a movement to reduce the treatment of DCIS because some types are dormant for years. But here is my thinking: having semi-annual mammograms, and having DCIS pop in 6 months and having it be quite different from normal cells in that amount of time (high grade) is a warning in my head that these cancer cells shouldn’t be messed with. One doc tried to scare me into doing rads this second time anyway because, ” Your second cancer cells outlived radiation and some hormone therapy the first time!”, meaning they were aggressive cells. But other docs agreed with me that this second cancer was from cells that were too few to be seen, just a little farther down the duct from the edge of the surgery and the 5 mm margin of radiation, to be affected. And so I had the opposite breast reduced without undergoing irradiation. I’m sad that I’ve lost a lot of sensation and that the sensation is sometimes painful, but I feel very confident that the cancer is gone and with even better diet changes, weight loss, and more exercise, this will be the last time I hear, “You have breast cancer.”

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  4. Ellen Berman says:

    Yes, I agree with litlady1 that there is rampant fear-mongering among breast surgeons — primarily, I believe due to the fear of liability and lawsuits should the cancer indeed spread or get worse and then the surgeon can be sued for not recommending the most radical treatment possible. In fact, even Dr. Hwang at Duke, one of the most progressive breast-cancer researchers in the U.S., nodded her head when I suggested that as a reason so many doctors recommend mastectomy. And by the way, when I consulted with her she even suggested mastectomy but I refused. I did have an area of high-grade DCIS, and ladies, her approach to high-grade DCIS is the same as most other surgeons – the radical approach; but the main reason I refused was that the “extensive calcifications” were simply SUSPECTED but not PROVEN to be DCIS, and if I later found out that, meh, most were just calcifications and I was minus one breast, I would have gone nuts. So for me, opting for a lumpectomy and watchful waiting has served me well.

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    • Connie Selby says:

      Yeah, my radiologists always said I had extensive calcifications throughout both breasts. They even showed them to me on the X-rays. But they NEVER said what that might mean, just that they shouldn’t be a problem. ????? But when a CLUSTER of MICROCALCIFICATIONS appeared, they were concerned that they were indicative of rapidly dying cells (DCIS).

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  5. MARI CATHERINE SULLIVAN says:

    All,
    I had DCIS high grade with comedonecrosis diagnosed in October of 2015. Talk about high pressure! It was also “breast cancer awareness” month so I was surrounded by pink this and pink that…The surgeon I saw said I had two options: lumpectomy followed by radiation or mastectomy. I thought I was going to faint, I was so blind-sided by this. But she DID say “This is not an emergency. Take time to figure out what you want to do”. When I asked her how much time, she said up to 12 weeks. Fortunately for me, I was scheduled to leave the very next day for my onward assignment with the Foreign Service to Manila and off I went. I am a mother of four kids, two in college and two in middle school and the major bread winner. I am also a Family Nurse Practitioner with over 27 years of experience in Medicine. I use my intuition every day to deal with patients and making clinical decisions and my intuition told me that NOTHING I was told about my DCIS made ANY sense to me. So I did mountains of research. I plowed through the literature, watched a few episodes of The Truth About Cancer and decided to go 80% raw and 100% vegetarian as well as take dozens of supplements based on a variety of articles I read. I lost over 40 lbs, feel better than I have in years and in March of 2016, (5 months later…not 12 weeks) decided to have a partial mastectomy to remove the DCIS and I had the other breast reduced to match and reduce risk (I have dense breasts). I went to Dr. Mel Silverstein at the Hoag Cancer Center in CA. He is an oncoplastic surgeon who has been at this for 40 years or so. He invented the Van Nuyes Prognostic Index. I told him not having clear margins was NOT an option so he xrayed the tissue as he removed it to assure he got it all. And he did. I went from a D cup to a B cup but I no longer had DCIS. HE removed 7.5 CM of DCIS, some of it high grade so they call the whole whack high grade….Then he, as well as everyone else STRONGLY suggested I do radiation but I didn’t want to do that and didn’t. I have been very good at staying on course but lately have fallen off the wagon because I have had to travel to remote places for work and was not able to follow my diet but I will get back on and hope for the best. I have High Grade DCIS that is ER+ and HER 2 +. I do take an AI but only twice per week and also take DIM and I3C to prevent the estrogen from recurring. I saw a naturopathic oncologist who was obese so already lost my confidence the minute I walked in the door and more recently found an Integrative DO who I like a lot but she is young enough to be my daughter! She found I had a high homocysteine level and wanted me to better protect my heart. So I am on loads of supplements but the key ones are curcumin, vitamin C 3000 mg twice per day, Vitamin D 10000 per day with K, DIM and I3C, Reservatol, and IP6. I will follow up in March, one year post surgery and may do a Thermogram and an MRI. I am hoping/praying for NED. Peace all. There is much more to this but that is the gist…..I need to do better with detox and with the spiritual side and exercise….so work to be done!

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    • Connie Selby says:

      Is it possible for you to have your tumor material tested with the genetic Oncotype DX test? I did, and it showed that my DCI S genetic material did not need radiation all that much. What a relief it was to know that.

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  6. Donna Salas says:

    I had DCIS 11 years ago. I did look into a more natural approach, but it was expensive and I didn’t make a lot of money. I had double health insurance and went that route. I chose to have a double mastectomy; no suspicion of DCIS or cancer in the other breast, but I was having other symptoms. I had reconstruction and like the results still. I just made the best decision I could at that time. I had a wonderful team of doctors and medical professionals at the Naval Medical Center San Diego. I had the best care, positive environment and care. At the beginning, my doctor said to get all the negative out of my life, eventually I divorced my husband and had limited exposure to him while recovering from surgery and instead had a friend who was available to go with me to all my chemo appointments and any other appointment necessary. My pastor from my church at the time, prayed with family, friends and surgeon. God was with me throughout my journey and still. I didn’t think twice when told I had breast cancer. I asked for the prognosis of life, made a decision and just got it done. Afterwards, I found out I was deficient in Vitamin D, a possible marker for breast cancer. I have changed my lifestyle and take my Melaleuca vitamins, supplements and nutritional support to remain healthier today than yesterday. If you can avoid it, do not get comfortable taking prescription drugs — reach for healthier solutions to aid you in health. I am a diabetic; take no meds — maintain it with lifestyle change and nutritional support. Be positive, be open.

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  7. alaa says:

    My dcis was very widespread and grade 3. I also had been walking around with a misdiagnosed morbus paget for 2 years (bcs of my young age nobody suspected it). I had a mastectomy bcs there was no defined lump. So it was a mix of reasons, the biggest of them being fear of course . Thankfully i did not need tamoxifen oder chemotherapy – this would have upset me more than surgery and im not sure if i would have followed through with it. You just don’t want to regret anything in retrospect so you listen to the doctors who also want to be on the safe side…

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  8. informedconsent2014 says:

    My situation is a bit different, because I haven’t yet been diagnosed with DCIS, but was recommended in 2011 to have a biopsy for a small cluster of microcalcs, R. breast. I was fear mongered by being told that I needed to get that biopsy immediately. I asked the surgeon if I could wait 6 months until a relative who lives out of town could be in town with me, and he said, “No! Don’t wait six months!!!” So, like many here, I got the big rush rush attitude.

    I decided to do some research online rather than rushing into this. I have other health issues that negatively impact my life, and I do not recover well from procedures and surgeries, so I knew I needed to take care and not blindly walk into something that I didn’t understand and knew little about.

    The first month or so of researching, I found basic information, but then somehow found Dr. Gilbert Welch’s info about overtreatment of DCIS. That opened many doors in my mind and then I had the great luck to find Donna’s wonderful site here DCIS411 and realized I was on the right track to question a rush to biopsy. I went back to my doctor and discussed all that I had found out. He wasn’t happy (and still isn’t), but also said that he felt I was a “very informed” patient. Score one for me! I felt at least somewhat vindicated.

    I told him that I would monitor for a few six month follow-ups with mammogram to see if anything changed. In the first two, there was no change in the calcs. So, I went back to yearly mammogram. The next couple seemed to show “some” increase, but I found the radiology report to be quite vague, with no numbers or description of this “increase”.. So, I am suspicious as to what exactly (if anything) has changed. Keep in mind I haven’t had a biopsy yet, so I could well have a benign condition.

    On my last mammogram in 2016, a really weird thing happened. The radiologist who did that report said “no microcalcs found” . I was overjoyed, because I wondered if maybe there was a radiologist who was reading the films in my favor. What an emotional roller coaster that was. My internist flew into action, got on the phone, and demanded a re-read of the film. Naturally, on the second read, this “mistake” was corrected to the original diagnosis of microcalcs with biopsy recommended. I was really depressed by this and still wonder what went on there.

    As far as decision making goes, it’s been a combination of concerns about protecting my health from overtreatment, doing tons of research online (as many of us here have done), questioning, questioning, questioning, not taking things at face value, and just listening to my own gut instincts on this. I tend to be a person who questions, esp. when it comes to the medical world, which I have always felt isn’t totally honest with patients for a variety of reasons. I’m aware that many doctors are coming at this problem from a malpractice standpoint, but that isn’t MY problem, that’s their problem. My number one loyalty is to myself, not to their lawyers, or their bank accounts.

    I’m blessed because I am able to research things online, and I can decipher the basics of medical studies. I have learned so much, I can never go backwards and pretend that I don’t know as much as I do. I am going to have my next follow up mammogram at the end of this month 2017, so that will make six years (not six months, as the surgeon warned me against with phony fear in his voice), that i have surveiled the microcalcs. If/when anything changes in a substantial way (not just some supposed “minor” change), I will decide what to do then. I am against radiation, so probably even if I did have a lumpectomy, I wouldn’t jump into radiation. For now, I am very happy with my approach, and feel that I have potentially spared myself overtreatment and harmful interventions. Decision making is very personal to all of us, and my way may not be your way, and that’s fine. We each have different bodies, different ages, different situations. The main thing I learned is that this isn’t “one size fits all”.

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  9. Annie says:

    Just wanted to share my story, I wish I had done more research before I did the core biopsy.

    I am 40 and recently had a mammogram check up and the doctor found a 7cmx4.5cm calcification area on my left breast. I was requested to do a core biopsy and was diagnosed DCIS grade 2. Since the area is quite big the core biopsy only sampled a smart part so the the only suggestion from my doctor is to a lumpectomy or mastectomy.

    What is interesting is I had a mammogram 6 years ago while I was working in China but I never knew the result so I called the hospital and asked them to pull out the record and it showed very similar large area calcification BIRAD -4 or 5 which means I probably had DCIS since 6+ years ago. I never felt anything during these 6 years, however, 2 weeks after the core biopsy and mammogram (I had a total of 6 shots on my left breast), I felt many new lumps and 3 really sore spots. The doctors I saw said some DCIS will never become invasive cancer, but unfortunately they just don’t know how to tell even that I had lived with this for 6+ years.

    I did more research online and found that it is possible for core biopsy to spread cancer and makes the situation worse.

    I decided to try Gerson therapy for a few months then I will see if I want to go for a surgery. But I will for sure not want radiation or hormone therapy afterwards.

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  10. Shiree Gillies says:

    I am 41 years old and was diagnosed with DCIS in November 2016 I had a mamogram ultra sound then a biopsy and told by an oncologist that I have DCIS and would need a lumpectomy followed by radiation.
    I have chosen to be strong and heal myself as I have a strong gut feeling that surgery and radiation will only increase my risk of further concerns so I am now eating a vegan diet and I am living a healthy happy stress free lifestyle that I believe will heal me.I have done a lot of reasearch in the last couple months and am happy that I have chosen this approach. I have recently come acros a documentary serious called The truth about cancer a global quest and there is some amazing eye opening information within this documentary serious that confirms in my heart that I am taking the right approach I recommend that everyone should watch this.

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  11. Connie Selby says:

    Please please please get back to us if you do a follow up mammogram as part of your active surveillance!!! I’ve had a diagnosis of high, then intermediate grade DCIS (six years apart). I would do the same treatments again if I had it to do over but if a future mammo showed low grade, I’m sure I’d do watchful waiting!! I’d like to hear from those who chose that route the first time, after your 3, 6, or 12 month follow up.

    Also, does anyone know if there are studies being done with randomized trials of traditional treatments vs active surveillance? Where/how can I read about them? Are there completed studies of that type?

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  12. Shana Stadler says:

    I am so proud of all of you for all you have been through. I was stage 1 Invasive Ductile Carcinoma with no lymph nodes. I have done a lumpectomy and 23 radiation treatments. I decided to stop. My anxiety was through the roof all the time and it didn’t seem right. I was supposed to go to 30 with the last 5 as boost. My sister is a physician and she helped me realize that the risk (mine was left breast) to possible heart problems, etc. risk vs recurrence – show me the study that indicates that my benefit is greater than my risk if I do 30 vs 23 treatments. We stopped. My husband had died from stage IV colon cancer in 2012 and this is early in 2017. I never dreamed this would happen to me but I have learned so much.

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  13. Shana Stadler says:

    My oncologist would not let me have any tests that would give me numbers. All I had was the Hi67 and my proliferation rate was 3%

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  14. Donna Pinto says:

    Wow…I just read through everyone’s comments here. Thank you all for sharing. We learn so much from each other and it is so important to feel understood and supported. Each case is so personal and different. I fonly the docs could know what we really go through! It is truly a emotional roller-coaster at points, but I do know that peace is possible despite all the crazy fear, opinions and what- ifs. I hope everyone finds strength and good information through this blog. If I can be of help, please know that I care and I am here! I think sometimes the comments end up going to spam and I don’t see them. Please keep sharing and I will do my best to respond! Thank you!!! 🙂 Donna

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  15. Teresa says:

    My story began at the end of May 2017, when I realized that the blood I had found on my pajama front a few months prior had actually come from my nipple. It was seeing blood in my bra cup that tipped me off–I hadn’t even known that nipples could bleed! After a few weeks of a flurry of tests (5 mammograms, 4 ultrasounds, 3 biopsies, and an MRI, plus genetic testing since I’m “only” 45), it was determined that the almost 7 cm of irregular cells in my duct, going all the way back to my chest wall, was grade 1-2 DCIS. I was told that, since only small samples from 3 areas were tested, there was a possibility of invasive cancer, and that, since the duct in question went all the way to my chest wall, a lumpectomy would leave me looking really strange, I should have a mastectomy (but only one, since the genetic testing came back negative). I met with a plastic surgeon, and in a daze of fear and ignorance, allowed them to schedule my mastectomy with reconstruction for July 10. Once it was scheduled, I realized it would be the 3-month anniversary of my mom’s death (she was 65 and having a “minimally invasive” heart surgery that went bad), I began to read everything I could about DCIS, and with the thought of my dad, for whom I’m now sharing responsibility with one brother (dad also is 65, but has dementia and can’t take care of himself fully), I asked if I could put off the surgery. The doctors tried to convince me to have the surgery anyway, telling me that there were no options for radiation or medication without first doing surgery. However, through my research I felt like, with diet and exercise, some supplements, and one (or more!) of the many, many “cures” for cancer that you can find all over the internet, that my DCIS deserved a chance to regress or even disappear before I amputated a part of myself of which I am rather fond (especially since it’s a part of a matched pair!). When my surgeon was able to wrap his mind around the fact that I was NOT having surgery (yet), he referred me a an oncologist, whom I met this morning. Tamoxifen was prescribed (haha–there really IS something they can give me before surgery!), and I’m now in the position of deciding whether I’m actually going to take it (the oncologist suggested I stop any supplements just in case they might react). I’m scheduled to go back to the oncologist in 4 weeks for a physical exam, and 4 weeks after that I’ll be treated to another ultrasound to check if anything has changed. Oh–and I have to have blood work every 4 weeks to make sure the Tamoxifen isn’t damaging my liver. Part of me believes that, with diet, exercise, stress-relief, and (maybe) the right supplements my body will heal itself. But I just came from the fear-mongering Western medicine oncologist a couple of hours ago…. What would you do?

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