Why a Double Mastectomy? It’s Complicated

Last week a new study with an inflammatory headline went viral: “Double mastectomy ‘not necessary’ for most women.” The study, from the University of Michigan Comprehensive Cancer Center, found that 70 percent of women who had a double mastectomy following a breast cancer diagnosis did so despite a very low risk of facing cancer in the healthy breast.

What troubles me about this genre of breast cancer research is the finger-wagging tone. Full disclosure, I had a double mastectomy without reconstruction in 2009. I was 38. I knew the risk of cancer appearing in my other breast was relatively low, but I made the decision that was right for me. In choosing a double mastectomy, I was in the minority. Only 8 percent of breast cancer patients opt for double mastectomy. That means, 92 percent of us choose something else. So why does that 8 percent drive researchers to distraction?

I picture breast cancer researchers in their labs, their clinics, their meetings, scratching their heads and asking themselves, “why do these crazy ladies lop off their breasts? They obviously don’t have the facts. They are making an emotional decision based on fear and anxiety.” And, for some women, that might be true. They might not know that (for most) a diagnosis of breast cancer in one breast does not increase the likelihood of breast cancer recurring in the other breast. They might decide out of pure fear. But I’m guessing the real reasons why 8 percent of breast cancer patients choose a double mastectomy are much more nuanced.

My decision to have a double mastectomy was complicated. A big factor for me was not wanting to have one breast. It might sound silly to some but I didn’t want a singleton. I wanted to be able to wake up, pull on a t-shirt, and walk the dog. That didn’t feel like too much to ask. I didn’t want to have to wear a prosthesis just to feel “even.” Reconstruction, which solves this problem for a lot of women, was not a good option for me. Another factor in my decision was that my remaining breast no longer felt sexy. I feared it would become a lonesome reminder of a terrible time in my life. Plus, I wasn’t planning on having children or breastfeeding.

For me, a double mastectomy made a lot of sense. But my reasons were all very personal and, therefore, difficult to measure in a research setting. I’m guessing other members of the double-mastectomy club have equally complex reasons for making the decision we did. Why must researchers continue to spend good money trying to figure out why we weren’t more swayed by data? Got research money to spend? Spend it on saving women’s lives not second guessing our decisions.


59 Responses

  1. Donna says:

    I am so relieved to read this – thank you! I was diagnosed with stage 4 inflammatory breast cancer in November, and my surgeon pushed back so hard when I asked her to remove both breasts, I thought that I was the only one in the world who wanted to avoid the lopsided look! I have found an ally in my hospital’s breast care coordinator, who set me up to meet with a sympathetic plastic surgeon next week and assured me removing the other breast would be covered. I just wish I could get it done NOW instead of waiting until the treatment is done because life with a single 34D breast is complicated, and I am tired of feeling freakish.

    • Hi Donna, You’re welcome! I’m so glad you found an ally in your hospital’s breast care coordinator. You’ll be on the other side of this before you know it. Hang in there.

  2. I have Stg 1 IDC in my L breast, Surgeons saying lumpectomy w/ radiation and 5 years Tamoxifen. Genetic tests neg for BRAC. My concern is radiation, and the Tamoxifen as I had mesh implant 3 years ago and my GYN was very emphatic that “the mesh must be kept moist”, of course now Premarin cream is contraindicated. I feel that taking the Tamoxifen will increase risks of mesh complications. Therefore I am strongly considering bilateral mastectomies, but feel I might be over-reacting. My surgery is scheduled for 11/16, I hVe not yet made my final decision.

    • Cornelia — Yours is a complicated case. I would encourage you to ask your oncologist if a double mastectomy would negate your need for Tamoxifen, as that was not the case for me. I had a bilateral and was put on Tamoxifen for a year. These are incredibly difficult decisions!

  3. Alana says:

    Thank you for this website, thank you for your candor and responses out here. I’m 47, diagnosed with ILC in July 2015, just finished chemo and am looking at BMX next month. From the beginning I’ve felt that I wouldn’t do reconstruction. My husband and I discussed it and he’s been on board with it. My onc and breast surgeon bother support my decision, however, wanted me to talk to a PS so I’d have all the options. Talked with the PS, and he claims implants are viable, but if they were to go in after the expanders and radiation and find too much damage, the expanders would come out and then I’d go flat. Well, that wasn’t a choice I wanted to consider… For me, months of expanders being inflated, one deflated for rads, then re-inflated, and then possibly not being able to do it at all and having another surgery to take out the expanders! I’m going with my original gut decision. BMX, no recon. Get back to healing and life again. I also didn’t want the constant anxiety of mammos, etc..

    To everyone out here, warrior on! Thank you Catherine Guthrie for putting this important topic out there for others to come to and not feel alone…

    • Thanks so much for your comment Alana. Sounds like you explored all the options with an open mind, got the best information from smart doctors and went with what felt right. That’s the best case scenario. That’s my wish for all women. To get clear, accurate information and be able to go with what feels right for them, their bodies, their loving relationships. Just because a plastic surgery option is viable doesn’t mean it makes sense for who you are and what you want for your life. Sometimes yes, but sometimes no. So glad you have a strong sense of who you are and what you want plus a loving partner to support you.

  4. CharlieGirl says:

    I was recently diagnosed with Stage 3 MDC – three tumors and 5 to 6 lymph nodes involved so far. My annual mammograms were all normal, then I felt a lump a couple months later. The large one is over 5cm. My entire medical team is in agreement that a mastectomy is a given. The other side shows completely clear in the MRI. We started with chemo to stop the spread, and that has given me time to consider surgery and reconstruction options. I have EE sized dense breasts, so I know that I could end up extremely lop-sided and I have no interest in that. From the beginning I have wanted to take them both off. Now that the other side shows clear, I find myself trying to justify my opinion and determine if I am just in reaction mode. I have interviewed several women who have been through this and the only ones I find that express no regret are those who had BMX and no reconstruction. I am very lucky to have this extra time to consider all options and I really, really appreciate your article and all the women who have chosen to share their experiences. Like Alana I will also have to have radiation therapy after surgery because of the spreading that has already occurred. My fear is that it got so out of hand on one side before I discovered it, how do I guarantee this doesn’t happen again? A very close friend is also going through this as she was diagnosed a couple months before me. They started with surgery for her and she had to make decisions very quickly. Too quickly as she now has lots of doubts and regrets. Your point that the focus really needs to be on getting women ALL the pertinent info and facts is right on target. They also need to be given some time to digest and realize that they have that time – even if the cancer is spreading – there is time for consideration of these life altering decisions. Thank you so much for this forum!

    • Thanks for sharing. Yes, we need to insist that doctors give us time to make clear, informed, and heart-led decisions. In some cases, women need to make immediate decisions. But this is not the case for most breast cancer patients. In most cases, the cancer has been growing for years. A couple of extra weeks will not alter the disease’s trajectory. Women need time to explore options, gather information, and dial in to their intuition. I’m glad you have this time to think.

  5. Ree Watson says:

    Hi, I have just found this wonderful site.
    Today I visited a genetic surgeon, to discuss my options regarding a mastectomy. I was diagnosed with stage 3 inflammatory Breast cancer in October 15. I am about to have my 7th round of 8 sessions of chemotherapy before surgery in early May. My consultant told me I would need a mastectomy of my left breast and removal of lymph nodes. I too like all the other wonderful ladies here have all of the same feelings of looking lobsided, but mostly about the cancer returning in my right breast. I had made my mind up about going ahead with a double mastectomy, although now am totally confused/messed up!!!! Due to a breast reduction 7 yrs ago I already have scares, although ‘good’ ones, and have been informed that healing could be affected.
    I am also not able to have the reconstruction at the same time as the reconstruction because of the need for radio therapy.
    Is there anyone out there who has experienced something similar???
    How does the reconstruction work with a removed healthy breast and differ from the other one?????
    Thank you xxx

  6. jo says:

    Hi yall am I the only one having problems finding tops to wear since my double mastectomy? I hate the bras with inserts They weigh so much and are so uncomfortable-I just hate going out in public anymore Maybe its just my phobia Thanx and Love Yall

  7. Ann says:

    Hello, In 2003 I was diagnosed with IDC while undergoing a PET test for a lung nodule. I had recently had mammograms and a clinical exam that showed everything normal. The tumor was over 2.5 cm. My mother, grandmother,and two aunts (mother’s sisters) all had breast cancer. I knew it was just a matter of time for me. I told the surgeon that I wanted them both off but let him talk me into a lumpectomy with A/C chemo and radiation. He said that he did remove healthy breasts. The radiation shrunk the affected breast so much that I have to wear a prosthesis on that side. In 2007 I was diagnosed with uterine cancer and had to have a TAH, The doctors said that the chemo could have caused this. That same year, 2007, my husband was diagnosed with GBM brain cancer and passed away in only three months from diagnosis. It was and still is very hard for me to live without him.
    Moving forward to April 2016. An abnormal mammogram, ultrasound, and biopsy has revealed IDC and ILC in the same breast. I have insisted on a bi-lateral mastectomy and pray that my nodes will be clear. Due to past surgeries and my overall health, a reconstruction with implants has been suggested. It’s a big decision and I do not relish the idea of complications and repeat surgeries but as others have stated. There is quite a bit of pressure on a woman to have reconstruction if she is single and hope to ever find a mate again.
    I do feel that I would be back to normal functions if I did not have the reconstruction.
    Thanks to all who post. It helps to know what others have faced and how they handled it.

  8. Suzanne says:

    I am 46, mother of 3 young children. Tomorrow will be two weeks since my bilateral mastectomies, without reconstruction, for invasive pleomorphic lobular cancer. Lumpectomy plus radiation was my surgeon’s recommendation. Although 3D mammogram and MRI showed a single lesion, final pathology discovered that there were four separate areas of invasive lobular in the right breast, and the left breast had plenty of lobular in situ.

    Reasons for bilateral mastectomies in my case:
    -extremely dense breast tissue
    -lobular cancer, which is more likely to recur and to be in both breasts.
    -pleomorphic subtype, which may be an indicator of aggressive tumor behavior
    -desire to avoid radiation in the region of my lungs (as a former smoker with elevated lung cancer risk)
    -desire for symmetry, and to have a choice to go without a prosthetic.
    -I know myself well enough to know that I would never be able to go in every 6 months for surveillance, and the anxiety of knowing that all of that screening missed 3 of my 4 cancers would haunt me.

    Thank you for your post on this topic. I feel that the pressure on women to step onto the breast cancer surgery, radiation, and reconstruction conveyor belt without respect for what the patient wants and needs and her reasons for those things, is harmful. So glad to be finding clear voices articulating similar thoughts.

  9. Thanks so much for your comment! I’m glad this post is still getting views, and I can’t wait for my memoir, FLAT, to come out in September. Not to be weirdly self-promotional (lol), but it was sooo nice to spend 250 pages writing about this topic ; ) I just have soooo much to say!