no reconstruction

The Decision to Go Flat

Recently, Florence Williams interviewed me for her Audible original series podcast Breasts UnboundFlorence Williams is a science writer extraordinaire and author of several award-winning books including Breasts: A Natural and Unnatural History (W.W. Norton 2012).

Click here to listen. My segment is 22 minutes into the podcast. I know not everybody’s got that kinda time, so I’ll see about getting a transcript. But, in the meantime, here are a few of my talking points.

  • My hope in writing FLAT was (is) to expand the conversation around options post-breast-cancer diagnosis. When I was diagnosed in 2009, I was pressed against cultural norms and assumptions of the importance of breasts and other people’s ideas about “what makes a woman.”
  • The predominant (and patriarchal) assumption is that breasts are paramount to a woman’s sexuality. Therefore, folks go straight from the breast cancer surgeon’s office to the plastic surgery consult without question. Patients are rarely encouraged to think about what they want for themselves versus for their partners and/or so they can pass in public as a woman untouched by cancer.
  • I applaud folks having the choice to reconstruct and the fact that health insurance companies are required to pay for reconstruction post-cancer. But breast cancer patients can’t make a fully informed choice unless they know their options. For example, I saw four different surgeons. Each described various reconstructive scenarios. Going flat was never mentioned.
  • Also never mentioned by the four surgeons were the risks of reconstruction, such as the high rates of complications and infections. Even under the best circumstances, most implants must be replaced every 8 to 10 years. A breast cancer patient who chooses implants as part of her reconstruction consigns herself to a lifetime of maintenance. This is no small thing.
  • Almost 40 percent of women in the United States who undergo mastectomy for breast cancer do NOT reconstruct, according to a 2014 study published in the Journal of Clinical Oncology. That’s 4 in 10 women. Other studies suggest the number is even greater. Yet, when we see representations of breast cancer survivors in the media they ALWAYS have breasts. Where are the 40 percent? Why are they invisible?

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.