Bilateral Mastectomies

By | Mon July 28, 2014

A friend sent me an email with a recent article in the New York Times about the prevalence of bilateral mastectomies entitled “The Wrong Approach to Breast Cancer“.

I read the article with much interest but also much distain. There are several issues that are not addressed in the article, but it also highlights some important trends and issues in breast cancer treatment. Let me start by sharing a couple of acronyms that will make this discussion easier – BMX stands for bilateral mastectomy, and PMX stands for prophylactic (i.e. preventative) mastectomy.

I also need to point out that the discussion is not about women with be BRCA1/BRCA2 breast cancer genes. Some useful statistics: 12% of women in the general population develop breast cancer, of these, up to 5-10% (yes hazy statistic there) MAY have an abnormal BRCA gene. For this small percentage of women, the likelihood of breast (80%+) and ovarian (25%+) cancers is huge. Prophylactic surgery for these women brings peace of mind.

The NYTimes article highlights that PMX is unnecessary as it does not improve survival rates. The article highlights the over-use of this choice. What the article doesn’t say is that one of the reasons so many women choose PMX is that they are sold on the ease of reconstruction. In the US, if a women has breast cancer, insurance is required to pay not only for treatments but also for reconstruction (I was told this at my very first surgical visit the DAY I was told I had cancer). A women from the UK commented that she was required to see a psychiatrist because she did not want reconstruction. The pressure to reconstruct is huge, but also, the way in which is it is sold is also misleading. The potential complications are understated.

The NYTimes article talks about statistics but does not take into account mental health. The far majority of breast cancers occur in only one breast (I’m an oddity). In many cases, women have the first breast removed, but then choose the PMX for the second breast. In some cases this is because of fear of cancer returning, as stated in the article, but in other cases it is because the women have difficulty living lopsided. The lack of symmetry becomes a constant nagging reminder of the cancer. It can be too much for some women. There are many women who are very happy about their choice of PMX and reconstruction, and many women who are happy about their choice for PMX and no reconstruction. What concerns me about this article is that it research stated like this gives insurance companies a reason to NOT do the surgery, when it may be in the best interest of the individual. Mental health and quality of live after surgery are two variables that are not considered.

I’m concerned for women who have PMX because they are sold on the ease of reconstruction, but I’m also concerned about potentially denying PMX for women whose quality of life will be significantly improved by it.

My personal case is different. I don’t qualify as a statistic in most studies because the nature of bilateral disease is not understood, but also because it is not very common. I have multi-focal cancers in my left breast (two tumors in different parts of the breast – the first is the one I felt (invasive ductal carcinoma, IDC grade 3 about 4cm), the second is DCIS (stage 0 non-invasive). In my right breast I have about a 2cm mass IDC grade 2 (it could not be felt and was found by a very good radiologist). So for some unknown reason my body suddenly started to grow breast cancer – and it did it quickly in multiple places. For me, the right choice is a BMX. It is not prophylactic, as I am not doing it to prevent a cancer from occurring. The cancer is already there.

I could have a lumpectomy to remove the three areas – but then I would need radiation treatments (I might still need them). I would need to have mammograms and maybe even breast MRIs every 6 months for the rest of my life. I would need to go through biopsies every time they found something suspicious, and any shadow would be considered suspicious because of my history. I would also be so very oddly deformed, with both breasts being different sizes and shapes. I would have a constant battle with body image. For me, this would lead to a terrible quality of life. I don’t want to live having to constantly worry about how I looked or when the next doctors appointment would be. It is bad enough to go through that during active treatment, I don’t want that to be my life after treatment.

I love the idea of being flat and having choices. What I hope for most is that my breast surgeon does a good job and I have nice clean scars. Then I can choose to wear foobs if I want an outfit to look a certain way, but I can also choose to not wear anything on a hot sunny day. I love the idea of a bra free life! To be honest, I rarely wear one now – but I’m finding that with all the insults to my breasts (biopsies and chemo) that I need to start wearing one more often, as they need to be supported.

What I really want to say about the NY Times article is that breast cancer treatment is an individual choice. Statistics can be useful in helping us make a choice, but the right choice is an individual one. For some women a PBX is the right choice, even if there is no statistical advantage to it, for others it is not. I get a bit insulted when the article assumes that women are making choices that are “not truly necessary” and assume that the doctor knows best, when the doctor isn’t the one having to live with the decision.

5 thoughts on “Bilateral Mastectomies

  1. Maha Bali

    So right, Rebecca “the doctor isn’t the one having to live with the decision”. You should publish some of your ideas on NYT for a wider audience. I find your insights on this issue really enlightening and EVERY woman lives in fear of breast cancer (don’t we? Have feared it since I sprouted breasts at age 10!) so you’ll benefit many people, if you’re up to it. I don’t know if others have written about it the way you do, but because this one is a response to an NYT article, I think the authors need to read your follow-up, as do many doctors who work with breast cancer patients who would prob never tell them in their faces what you just said.

    Women are particularly vulnerable to this because most(many?) surgeons are men, and they’ll never get pregnant for example, and though men can get breast cancer (i hear prognosis is bad) it’s not a major form of cancer for males. It all leads, in my view, to a total disconnect between doctors and patients in a way that is demeaning.

    It is almost like, because men like breasts to look pretty, then women must want to look a certain way, so let’s help them look how we want to see them…

    Reply
  2. Claire Harrison

    I agree with the responder above. At the very least, you should write a letter to the article’s author or to the editor. Warrior! Remember?

    Reply
  3. Diana

    During the last two years since my double mastectomy for high grade comedo necrosis dcis breast cancer in my right breast where 10 out of 22 of the segments of my breast had more dcis after one biopsy, three lumpectomies and non clear margins. I have had countless ignorant and inconsiderate people talk about my double mastectomies as if they were optional. I love how you said we have our own “Individual choice”. Do they seriously think that we are pushing to have both of our breasts removed without serious discussions with medical professionals who work with women with breast cancer every day.

    I know what we know, I know what we don’t know, but I respect most the breast surgeons and radiologists and oncologists who admit what they don’t know that they don’t know. I had three opinions, by three excellent surgeons. Sure I could have taken my chances until the “Real Thing” came along. Stage 1, Stage 2, Stage 3, Stage 4. , but I do not like playing russian roulette. I wanted to save chemotherapy and radiation for the “Real Thing” that I did not have forsight on. Precancerous legions are just that opportunities to prevent cancer from coming into our ducts. My individual choice was to remove them before anything “Invasive” developed that could possible threaten my life in the future. I know what they don’t know, breast cancer is not an exact science yet. Until not one woman dies from metastatic breast cancer and we can prevent this deadly disease will I stop encouraging the medical profession from studying and researching.

    I beg people to consider how difficult a decision removing both breasts are. We are not doing this for cosmetic reasons only. Our doctors are helping us to make the best medical decisions possible with the limited scientific data that is available. Yes there are complications to surgery, but yes there are also side effects to radiation. The goal is to limit the disease and give each woman/patient the dignity to make an informed choice with compassionate medical professionals that are knowledgeable and experts. Please do not second guess our “Individual choice” Thank you I am getting so much out of your blog and our discussions.

    Reply
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