DCIS: Support, Options, Sanity
I recently created a website/blog (www.dcis411.com) to share my 2+ year journey with (low grade) DCIS. Following 2 recent surgeries (lumpectomy + re-excision) and several conflicting opinions regarding treatment due to a VNPI score of 8 and a "close" margin, I have chosen NO RADIATION, NO TAMOXIFEN, and NO RE-EXCISION or MASTECTOMY. I had a clear "RODEO" MRI in January and I am taking an "active surveillance" holistic approach. I would like to offer my two years of research and insights to anyone who is out there searching (as I was) for the least invasive, most health-promoting way to reduce risk and prevent breast cancer. ~ Donna ~ www.dcis411.com
Comments
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I wish you success with your chosen treatment plan. However, I am happy that I decided to have a mastectomy. My DCIS did not show up on my mammogram but a very tiny spot was found in 2 places on an MRI. A core biopsy found traces of DCIS in one of the areas but only atypia in the other. I was given the choice of 2 lumpectomies plus radiation in the same small breast or a mastectomy. 2 lumpectomies would have left me pretty mangled. Thankfully, I went with a unilateral mastectomy. The final path report found DCIS in both lumps plus throughout my breast. If I had chosen active surveillance my cancer may spread and done more harm before it was found.
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mawhinney,
If you were stage 1b that would mean there was an invasive component and then we are not talking about low grade DCIS. I think we all come to our decisions based on an inuitive knowing that is our driving force. Happiness with decisions is truly great and I am happy that you are happy!!! I have met/corresponded with many women with low grade DCIS who are looking for support to take an "active surveillance" path and I think we are few and far between (about 3% I have read). These are really tough choices and my hope is that women make their choices not out of fear, statistics based on one size fits all and "standard of care," but with ALL the information based on individual case, multiple opinions and peace. Thanks for your comment and I wish you continued happiness and health!
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I wish you luck and continued good health, but I am concerned about women with poort margins following your lead. I was told odds were in the 38 percent chance of recurrence, after lumpectomy, if I did nothing else,and a 50 percent chance of it being invasive it if recurred. I also have read too many stories from the stage 4 women who had regular exams and yet nothing was found until it had already spread. I opted for the BMX and they found additional DCIS when they took off the breast. I also like my current odds ( >1 percent) for recurrence. But I agree that this is an entirely personal choice, and my risk tolerance may be different from yours.
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Thanks for your comment alexandria58. There really needs to be more studies on women like me who are doing A LOT of natural risk reduction and health promotion, but unfortunately there is no $ in it. I was told similar statistics, but there is a lot that is not taken into account with those statistics. We all do what we feel is in our best interests and we all have our reasons for our choices. Every woman must make their own decision based on ALL the information. I am fortunate to have learned about health and healing from the inside out and I know there are many many women out there who are searching for support and resources from someone like me (I hear from them every day). There is great controversay on the overtreatment of low grade DCIS and it is only fair that women have all the information and resources before making such important life-changing treatment decisions. There are also many people with invasive cancer taking an "alternative" healing path and many stories of successful healing that the cancer industry does not want to be studied, promoted or known. I know my way is not the popular way and I'm sure your concerns are felt by many, especially on this site, but I know that I will resonate with a minority of women....and my experience, insights and resources will be a guiding light. Blessings of peace and health, Donna
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Donna, one of the great things about this website is that we get to see it all. There's such a variety of women here that every perspective and point of view is represented. If someone is looking for someone who approached her diagnosis a certain way, or took (or didn't take) certain treatments, there is always bound to be someone who comes forward who meets that criteria and is happy to share her experience.
Having spent the past 6+ years hanging out here, mostly in the DCIS forum, I share your concern about the over-treatment of low grade, low risk DCIS. The word "cancer" is scary and often treatment decisions are made based on that single word, rather than on the specifics of the diagnosis, which in some cases of DCIS might in fact be very low risk.
By the same token, I've also seen many situations where women come to the board, adamantly set against the treatment recommendations of their doctors, be it a mastectomy or radiation after a lumpectomy, or sometimes just any surgery at all. These women believe that DCIS is DCIS (it's all the same) and they've read that DCIS is over-treated, therefore they are convinced that what's been recommended to them is over-treatment. However in most of these cases it turns out that the diagnosis is not low grade, low risk DCIS and the recommended treatments really are medically necessary. Just as I am saddened when I see over-treatment of low risk DCIS, I worry even more when I see under-treatment of high risk DCIS. In 6 years, I've unfortunately seen the implications of under-treatment - a recurrence, sometimes invasive, and then the need for a mastectomy and possibly chemo - too many times.
Whatever the diagnosis, I certainly agree that "every woman must make her own decision based on ALL the information". When I post here offering information or advice, I always try to present all the options in as unbiased a fashion as possible. That's what I strive for, but I don't always succeed. The good thing about this website is that if I don't provide the complete picture and all the information, I know that someone else will come by who will provide a different perspective and additional/different information, or maybe some new information that I wasn't yet aware of.
Since you are suggesting that women with DCIS visit you on your website, my question for you is whether on that site you provide ALL the information about both a traditional full treatment regimen and lesser treatment options, or do you focus primarily (or solely) on an "active surveillance holistic approach"? What do you say when someone whose DCIS diagnosis is not low grade and low risk, comes to your site and wants advice on how to follow your less invasive, lesser treatment approach?
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Hi Beesie,
I appreciate your comments and questions. I found myself not able to spend much time on this site or any others intially because I didn't find the support I was needing. Yes, there were/are many stories of women who start out with DCIS and go on to have recurrence or invasive cancer, but that's not the support I was looking for. (I was already hearing that from my doctors). Considering I had low grade DCIS and did not feel right about the treatment options initially presented to me, I wanted to find others NOT doing "standard of care" but were choosing active surveillance/holistic health and natural risk reduction. Due to the nature of DCIS, the varying degrees, the uncertainty and depsite the debate even amongst well known breast cancer experts, surgeons and oncologists, very few women feel emboldened to take the path I have taken. I found one woman, who thankfully posted a link to her website here at BC.org -- and that was a HUGE help/support -- which gave me even more support for my difficult decisions. I have seen a lot of your postings and they offer invaluable insight into what the "standard of care" says -- and it is great because most women leave their doctor's office spinning with questions, confusion and fear, fear, fear. You offer them solid information based on years of research and personal insights from your experience. What I am offerring is exactly what you stated -- a different perspective and additional/different information, and maybe some new information that you/others may not be aware of. My website offers my personal story/perspective with both conventional treatment (I did have 1 core needle biopsy and 3 surgeries) AND a holistic, integrative approach to risk reduction and active surveillance. I also offer health tips that I know will help anyone going through the ordeal of a DCIS or breast cancer diagnosis as well as those that are interested in reducing risk and preventing recurrence. My advice to someone who has high grade DCIS would be to first get a 2nd opinion on the pathology -- and I offer a specific resource for that. I would also never tell anyone that they should not do what their doctor is recommending. I just want women to have access to the controversial information and take the time to question, research and make a truly informed decision, not just a decision based out of what one doctor says, statistics or fear. I was fortunate to have a lot of counseling around the fear that is associated with cancer and I almost made decisions based from that fear. So, I know how that can be. We all go through it. But I was able to come to a place of peace with my unconventional decisions....and I'd like to be able to offer that sense of peace to others -- and not just hear more of the same concern, fear, statistics, stories of recurrence and "what if...." that we are already hearing from our doctors and others who are following the "standard of care." Maybe there are 2 or 3 women out of 100 who are like me -- just searching for support for what they feel so strongly about, yet they feel so alone. Those are the women my website is really for. I think this is a healthy dialogue and one that is long overdue. Thank you Beesie. We need more converstaion and more dialogue around the topic of DCIS and individualized treatment. From recent articles and the latest research, I feel we are moving in that direction. Thanks for all your valuable input and for helping women gain more understanding. Blessings of peace and health, Donna
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I just want to note for the record that I exercise, eat mostly vegetarian/organic, eat cancer fighting foods and herbs, am a healthy weight, and so are many women who go on to develop invasive cancer. I am very supportive of alternative treatments in conjunction with standard medical treatment, but am concerned when standard treatment is rejected for alternatives. It is a personal choice, which you have every right to make, however,I remain concerned that you, in your blog, are be encouraging women to forego treatment that could be lifesaving. I am also sorry to say that two years out is not that long a time in breast cancer - DCIS - world. I read a lot of studies when I was making my decision, and several of them mentioned that low grade DCIS may simply take longer than high grade DCIS to develop into invasive cancer, more in the 5-10 years than the 1-5 years.
Until there is a more reliable method to determine whether certain DCIS cells will or will not progress to invasive cancer, I remain somewhat skeptical about encouraging a foregoing of further treatment. I am also skeptical of some of the articles about "overtreatment," again concerned that cost concerns may be driving these comments at the expense of women"s heath.
Alex
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Donna, thank you for the very thoughtful response.
Maybe things are different here since the time you were diagnosed, but lately there have been many discussion in the DCIS forum started by women looking to avoid all the bells and whistles of treatment. For example, more and more women are questioning whether radiation is necessary after a lumpectomy. I'm among the first to tell them that "no, it's not always necessary, even though most doctors will recommend it". Same with Tamoxifen.
The challenge, as I see it, is that the women who ask these questions are self-selected. Before coming here they've decided for themselves that they want to avoid over-treatment (or sometimes, any treatment). They come here to ask whether others have done what they want to do, which is to go against their doctor's recommendations. The problem with self-selection is that those who choose to ask these questions are not always the best candidates (medically speaking) for going against their doctor's recommendations. If someone has a small, low grade, low risk diagnosis of DCIS, there might be little risk to skipping radiation and/or Tamoxifen. There are many women here, myself included, who will tell them so, and who will recommend a 2nd opinion if their doctor is unbudging about the treatment plan. But if someone has a large and/or aggressive DCIS, passing on radiation and/or Tamoxifen (and surgery, as some would like) could be very risky. Many of us here, myself included, will come forward to try to explain why. And again we'll recommend getting a 2nd opinion.
When women go to your website, they are self-selecting. From what I've seen here, I'm sure that some of these women are not candidates for the minimal treatment approach. However those who self-select are simply looking for someone who agrees with them, someone who sees things the way that they do. It doesn't take a lot to convince someone to do what they already want to do. It does take a lot to convince someone that a different approach, one they really don't want, might be better for them. We both agree that we want women to make their decisions based on having all the information. Yet as you explain it, on your site women get just a single perspective, not all the information they need to make a fully educated decision. For someone who is a candidate for a minimal treatment approach, that's not a problem. For someone with an aggressive diagnosis who isn't a good candidate for a minimal treatment approach, that's worrisome.
There are a lot of women who come here with a low risk diagnosis of DCIS who've only heard the word "cancer" and who make their treatment decisions based on that. I, and others, try to explain that all DCIS is not alike and the same treatment is not needed for a small low grade DCIS as for a large, high grade DCIS. The message usually doesn't get through. It would be great if you stick around here to add your voice to the discussion; maybe some of these women will head to your website to hear more about your approach and get a more complete picture of their options. By the same token, if someone with a large aggressive DCIS shows up on your doorstep, I hope that you suggest that they come here so that they too get the complete picture.
I couldn't agree with you more that individualized treatment is what we should be striving for, so that everyone is properly and adequately treated. It would be nice if we could reduce both the over-treatment and the under-treatment that we currently see with DCIS.
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Thanks for your reply Beesie & Alex. I had written a very long reply back but when I went to hit submit, it vanished! So it was not meant to be. I very much appreciate this healthy exchange. I created my website/blog because I felt there was a real lack of support around the kind of information I was discovering -- the information that empowered me to be strong in my beliefs and choices, despite the statistics and rush to treat DCIS so aggressively. I know other women want and need this information and I hope to make it easy for all women to find my site. That was my intention for posting it here. Most women have never even heard of DCIS -- until they or someone they know get the diagnosis. This is something I feel needs to change. I spent the last two years researching articles on DCIS, cancer prevention and posted everything I could find on a Facebook Group called "Donna's Choice: Global Healing From The Inside Out." I created DCIS 411 to share my investigation, personal story and gather the resources and articles in a cohesive fashion focusing solely on helping women diagnosed with DCIS. The "standard of care" info is pretty much a given with a DCIS diagnosis. Beesie, I feel you are saying pretty much the same things my oncologists or surgeons have said. Nothing different or new. The good thing is you take the time to explain it in a way that women can understand and digest and you offer your personal insights. You definitley know your facts and I appreciate what you offer here. But with all that you offer, it did not give me the support I was looking for...and I know there are others like me that are looking for more support. I also want to say that it is not really fair to say that I am going against my doctor's recommendation. I simply found a doctor whose recommendation I was more in alignment with. There are all kinds of conventional doctors recommending different things. This is what I want women to know. Just because one doctor recommends a treatment plan, that does not mean that is the right or best treatment plan for your particular situation. It took me 4 doctors to find one that I aligned with. I am doing the treatment plan she suggests. I am waiting on results of the Oncotype DX Test before determining my next step. I am researching and evaluating if tamoxifen is a wise treatment choice. I am in no rush. I had a follow up RODEO MRI 3 months post surgery and it was clear. My surgeon had never heard of a RODEO MRI and I had to drive 1.5 hours away to UC Irvine where they had this special dedicated breast MRI. This is another important conventional resource I list on my site.
I know 2 years is not a long time in the DCIS world from a recurrence standpoint, but from my perspective, it has been a long journey of constant investigation, decisions, biopsies, surgeries, results, follow-up as well as coming to a place of total health and peace of mind with it all. I did not have much support for the first year, but then I found Sandie Walters who created a website called "DCIS without Rads" (she thankfully had posted it on this site and others). It was exactly the information I was searching for. We have since become good friends and have shared many exchanges and resources. We are considering starting a DCIS-specific nonprofit organization. Several DCIS friends we have met who feel similar in our approach and perspective are encouraging us. And we couldn't agree more, we must find better, saner ways of treating and preventing DCIS & breast cancer.
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I just also want to respond to Alex's comments and emphasize that I am not rejecting conventional medical advice for "alternative" on my site. If you read Why DCIS 411? (I wish I could cut and paste, but it doesn't work), I state, "Above all DCIS 411 provides women with the latest information from credible breast cancer experts -- 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." I go on to quote Dr. Laura Esserman, professor of surgery and radiology at UCSF and Director of the Carol Franc Buck Breast Cancer Center at UCSF. I think it is VERY IMPORTANT patients diagnosed with DCIS hear this perspective as well what they hear from their doctor. Dr. Esserman is not the only conventional medical doctor saying we need to rethink how we treat non-high grade DCIS. The home page of my site has quotes from several other conventional medical doctors. I want to be clear that I am not rejecting standard treeatment for "alternative." I am encouraging women with a DCIS diagnosis to take their time, research, get ALL the latest information and absolutely get 2nd, 3rd or even 4th opinions if something doesn't feel right. My intention is to make it easy for someone to find the information I spent two years gathering and not feel so overwhelmed. I have been very calculating and careful with my decisions and I am encouraging this for all women. There will never be any absolute guarantee that those with DCIS -- even low grade will not go on to progress to invasive. We get our statistics and risk of recurrence and even if it is 2%, we could still be that 2%. The big problem with choosing less treatement is the higher chance of recurrence or invasive. But there is no guarantee if we do all the treatment (such as radiation) that we won't have a recurrence or invasive cancer....and then radiation is no longer an option. A women contacted me who had a small stage 1 tumor removed 6 years ago. She did 6 weeks of radiation, took tamoxifen for 5 years and now is diagnosed with DCIS. There is just no rhyme or reason. She too ate healthy and exercised. She is extremely grateful to have found my site and is getting a 2nd opinion from Dr. Lagios. Another women with DCIS also found Dr. Lagios through my site and her treatment plan changed due to his 2nd opinion on the pathology. She was spared getting a mastectomy and is at peace now with her situation. Sandie Walters, who created a website called "DCIS without Rads" offers her personal story of how her treatment plan changed due to a 2nd opinion from Dr. Lagios and a RODEO MRI. She gives similar advice and resources on her site but it isn't as extensive. Those of us taking a slower, active surveillance approach need support just as much if not more. This is what people don't understand. There is too much criticism and judgement -- and we are made to feel as though we are taking our lives in our hands and being a bad example for others. There needs to be more understanding and acceptance. I appreciate Beesie's comments welcoming me and encouraging me to stick around. I really care about women diagnosed with DCIS and I truly want to help. My intention is not to steer people away from conventional medical advice; it is to empower women to know that they have options and can find peace of mind living with the statistics and fear presented to us. More reliable methods such as the Oncotype DX test and vaccines are on the forefront....we need to advocate for more studies and for insurance to cover these tests. My original oncologist didn't even know about the Oncotype DX for DCIS test. I had to ask 2x before they said they would order it. But I had already gone to another Dr. who ordered it immediately. I share my ongoing story on my site as I think this may be of help and support for others to take charge of their own healthcare and not feel bullied by the system. I know it is not for everyone and it may be beyond your comfort zone, but I am convinced of it's importance. Thanks for engaging me! Blessings of continued health and peace on your path. ~ Donna
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Donna,
You claim that "Above all DCIS 411 provides women with the latest information from credible breast cancer experts -- 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."
Frankly, as someone who had DCIS along with IDC, I find your "vitally important" advertising dangerous and misleading. Your credible breast cancer experts are Mercola, NaturalNews, Robert Young, BreastCancerAction, and Suzanne Somers? Sorry, but they're predatory quacks and cranks of the worst kind.
To be clear, I'm sincerely happy that you're doing well and it's great that want to share your information, but what breast cancer patients really need is factual, accurate, and evidence-based information. Despite what you claim, it's clear that you are advocating that people go against the recommendations of their doctors and buy into quackery. They're also well known for their affiliate income/referral wealth-building programs. Any chance you profit from promoting their ideas?
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I was dx with DCIS in 1 breast and my BS was almost crying ,trying to be gentle in telling me that it was by no means a death sentence. It took HIM a few minutes to hear me say OFF with it. by the time my recon came around DCIS was showing up in 2nd breast. I realized MY big mistake was not saying OFF WITH THEM. I didnt need rads, chemo was suggested but I knew I would not be able to handled that. I have NOT been sorry one moment for my own decision, but I also know that I could get another CANCER somewhere else {not cervix,ovaries} I had my "history" taken lock,stock & barrel 20 years ago.Not due to cancer. Everyone needs to travel thier own path with gentle advice,helpful advice, from as many factions as possible. We can only tell our own story, not anyone else's. ThankYou for listening---------kad2kar
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Oh this is getting heated! Thank you for your comments "thennewme!" The credible breast cancer experts I am referring to are the quotes on the home page as well as Dr. Lagios, Dr. Silverstein and other conventional Drs. I specifically do not quote the resources you are referring to on the home page. Those resources are definitely more alternative and yes, I believe it is important to gather information from "alternative" sources as well. I'm terribly sorry, but when it comes to DCIS there seems to be very little factual, accurate and evidence-based information. The experts can not agree. I went to 4 conventional doctors and they all told me something different. This is the important point of why women with a DCIS diagnosis need to gather all the information and not just blindly follow one Dr following the "standard of care." Many women & men will benefit from my site and from the info found from the sources you are bashing. It is obviously not for you and I'm sure there are many other women on this site who feel the same (why I did not share my views for a long time). Like I have said, there will be 2-3 women out of 100 who resonate with my site -- and those are the women it is for. By the way, I am reading Suzanne Somers book "Breakthrough" and I absolutely resonate with the doctors in her book and most of what she says! I wonder whose profiting from the antiquated cancer industry and the billions of $ for the cure??? No $ in it for me...just karma points! Peace and blessings of good health to you! ~ Donna
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It's funny kad2kar, I always tell my best friend, if she got my same diagnosis, she would have a mastectomy in a heartbeat. She is a worrier and could not live with the constant uncertainty and thinking the worst. That would be the right path for her. You have got it right. I am simply sharing my story. Those that resonate will find some solace. Thanks for sharing your thoughts and experience. ~ Donna
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Re: "I'm terribly sorry, but when it comes to DCIS there seems to be very little factual, accurate and evidence-based information."
Sorry, but with the sources you're using, that's exactly what I would expect you to find.
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Donna, as an FYI, Dr. Lagios and Dr. Silverstein are often referenced here. I provide links to their studies all the time. Additionally, I and several others who frequent the DCIS board often refer women to Sandie Walters, to take advantage of her experience when it comes to options for small, low risk diagnoses of DCIS. So I really don't agree that this board is as focused on traditional 'standard of care' treatment as you suggest.
Back to one of my earlier points, worded a little differently. I like this website - and remain here after 6 years - because there is such a diversity of opinion and knowledge and experience. I am not a doctor and despite all my reading and research over the past 6 years, I know that there is a lot that I don't know - I continue to learn new things all the time by reading the posts of others. So as much as I believe I know about DCIS, as current as I believe I am on the data, as often as I dig through the research studies, I would never want to be in a position where my opinion and my choice of sources and experts was all that someone got. I may not feel that I have any bias or that I filter the data, but the truth is that we are all biased and we all filter the data. And that's simply not very good for someone who is newly diagnosed, who needs to hear all the perspectives and understand all the options. It's this broad perspective that women get when they come to the discussion board here at BC.org. That's the value of this board, that's why I stay here and that's why I think newly diagnosed women are best served by staying here.
By the way, I'm sure you are aware of this but for anyone else reading, the Oncotype test has only been available for use with DCIS patients making radiation decisions since December 28th 2011. This was announced at the San Antonio conference on December 7th and actually was reported here in the discussion threads on December 6th. I'm guessing that if you found an oncologist who ordered the test for you prior to that date, then it had to be a doctor who was working with Genomic Health in their trial.
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Great discussion!
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The Oncotype DX test was reported on these discussion boards by several people even before the presentation at the San Antonio Breast Cancer Symposium.
In the time I have been here there have always been posters talking about the pros and cons of radiation therapy and tamoxifen for DCIS. The evidence base in this area is more substantial than many other areas and many viewpoints are generally represented in discussions here. I agree that this is the benefit of this site as opposed to one that advocates a specific limited position with sparse data.
P.S. You are actually citing Suzanne Somers as a source! A good reason not to check out your website.
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I have already stated that I know my site will resonate with only 2-3%. I mainly follow the advice of an excellent naturopathic doctor and an orthomolecular nutritionist. I simply resonate more with their ways of risk reduction and prevention for my situation. Both have experience treating and helping cancer patients -- whether or not their patients do conventional treatments as well, their advice is scientifically based. I have learned so much about true health & healing. The articles on my site are mostly part of the on-going debate/controversy around low grade DCIS & mammograms and they come from all different sources -- both conventional doctors & alternative/integrative. It's very easy to call people quacks, but if you understand what they are saying, it truly makes sense from a health-promoting perspective (even Suzanne Somers and her doctors). I actually didn't read any books my first year after diagnosis except one: "Patient Heal Thyself" by Jordan S. Rubin. I only started reading books on balancing hormones and others like AntiCancer listed on my site because Sandie Walters recommended them on her site. I am just now reading Breakthrough by Suzanne Somers and I think it is excellent. I also think the message boards at BC.org are great. I just felt very overwhelmed reading all the stories and didn't find much support for the path I was choosing at the time. I was reluctant to share my choices because I didn't want to hear more statistics, "concern" and fear from others as I am hearing now. I am very confident in my decisions now and can take it much better than I could have initially. I am already being knocked down on this thread and have been told not to promote my site by the moderators (so much for support). I just want to share my journey and research I discovered that I found helpful. Others may or may not find it helpful. It is just there for those that want it. I'm sure anyone diagnosed with DCIS is not going to base their treatment decision solely on my website -- and yes, Beesie, I would send them here, and specifically to you for information should they have high grade DCIS. Anyone doing any research will find breastcancer.org just by doing a google search and asking a question. By sharing my website, I am not intending to take anyone away from this site. I'm just offerring to share my on-going journey and insights.
I had to tell my oncologist about the Oncotype DCIS test -- and this was mid February after her nurse told me in January that the test didn't apply to my case (she was only aware of the Oncotype for invasive cancer). The point is there is new information and testing that one Dr. may not be aware of. Yes, I did see that the news of it came out on this message board immediately. And yes, I have also seen Dr. Lagios and Dr. Silverstein mentioned here. This is also where I found Sandie so I am eternally grateful to this site.
Lots of women create blogs to share their experiences with DCIS or breast cancer. Some are strictly alternative; others are just sharing their experiences of conventional treatment. I am no different. I am sharing my experience and bringing the controversy around DCIS and mammograms to light. I don't claim to be anything but a normal person going through a challenging diagnosis just like everyone else here. But, I am traveling a path less traveled and I haven't found many like me. Hoping to find others on the same wavelength. Everyone's entitled to their opinion/perspective. Thanks to all for chiming in! Peace and good health, Donna
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I also site I AM THAT by Sri Nisargadatta. "The consciousness in you and the consciousness in me, apparently two, really one, seek unity, and that is love."
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Received Oncotype DX Test results tonight....LOW RISK for invasive cancer!!!
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What a great thread! I too had low grade DCIS. But I had many, many reasons for deciding to do a BMX. It was a very tough decision, and my age and family history had a lot to do with it. At 37, with a mother and maternal grandmother who had breast cancer, my risk was high to begin with. My grandmother died of breast cancer because she caught it too late.
Also, my DCIS was difficult to find. Luckily, I found a lump, but ultrasounds, mammograms, MRI's and needle biopsies were inconclusive. It took an excisional biopsy to find 2cm of DCIS lurking underneath.
This is a very personal choice, but I have a 4 year old child and decided that I wanted to maximize my chances of having a long life. I also didn't want rads or Tamoxifen for health reasons. And for me, a BMX was a better choice if I wanted to expand my family soon. My ER/PR+ DCIS may have had a higher chance of recurrence during pregnancy, and if I had opted with rads or Tamoxifen, I would have had to wait a couple years before getting pregnant again.
Again, a very personal choice, but for me, it was the right one and I have no regrets.
Good luck with your surveillance!
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- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
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- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
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- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
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- 591 Pain
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- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team