When my surgeon told me that I had triple negative breast cancer, she indicated that because of the aggressiveness of my disease, but mostly because of the size and location of my tumor, I would probably need a mastectomy on that side. (A lumpectomy would have left me far too disfigured to be easily corrected by a plastic surgeon.) The words were hardly out of her mouth before I asked if a double mastectomy would be an overreaction. She assured me that it wasn’t an overreaction, though a contralateral prophylactic mastectomy– a mastectomy of the other side to prevent breast cancer– was not shown to increase my overall survival. (If I were to have had a BRCA mutation like Angelina Jolie, however, this would not have been the case. The genetic mutation in those ladies makes their risk of a new cancer in the other breast very high.)
I heard her words– it was a major surgery not without risk, and it would not make me live any longer. I understand survival numbers and statistical significance, I know how to make evidence based decisions. Yet the decision that I made was not evidence based. I would think just realizing that would upset me, but I know that I didn’t make an uninformed or hasty decision.
A recent publication in the Journal of the National Cancer Institute reiterates a lack of survival benefit associated with contralateral prohpylactic mastectomy (CPM), blaming a perceived benefit as the reason CPM rates have increased substantially– that women don’t understand they won’t live longer and so choose CPM. This has sparked a lot of discussion, both in the scientific community and mainstream media. How could an intelligent woman understand that it won’t lengthen her life and still choose to have a healthy breast removed?
I remember laying on the procedure table, waiting for the bleeding to stop after my second biopsy (it turned out to be a rather bloody affair) and talking to my surgeon about my future surgery. She told me that a CPM wouldn’t increase my survival. She may have even asked why I wanted to have a double mastectomy. At that point, I hadn’t done any research, looked at any pictures, even really discussed it with anyone. Almost instinctively, I told her that if I were to survive this cancer, I still had a lot of years left to live. I didn’t want to spend those years worrying about my “healthy” breast– the mammograms, the MRIs, the anxiety. Reconstruction after a single mastectomy usually includes some sort of lift and possible augmentation on the healthy side to match the reconstructed side, but I knew that I’d likely be happier with the cosmetic results from a double mastectomy, too. She assured me that those were valid concerns, but I had plenty of time to think and consider my options. Choosing CPM is not without a downside. Mainly, the loss of sensation is a big deal. I still have some nerve issues in my healthy breast that causes me a fair bit of irritation (think of that tingly feeling when your foot is just starting to fall asleep) when I wear a seatbelt or a bra. Good thing my reconstructed breasts don’t require one of those pesky things!
With all the talk about this study, I have caught myself wondering if I made the right choice. Would I have been happier to still have one natural breast? It turns out that sometimes even a scientist has to abandon evidence based decision making. I used more emotion than data in choosing my surgery, but I am convinced that I made the right decision for me. I know it won’t get me any more days at the pool with my kiddos, but I like knowing that those pool days will be free of worry about an upcoming mammogram or the self-consciousness that my breasts don’t match. We women have enough to worry about in a bathing suit as it is!
CPM isn’t the right decision for all women, and in fact, may not be the decision I’d make if I’d been diagnosed in my seventies instead of my thirties. There may be women who don’t fully understand the survival benefit (or lack thereof) of CPM, but I don’t think that it’s fair to suggest that all women choosing that option were ill-informed or made an “almost primal” decision to offer up a healthy breast as some sort of maternal sacrifice for our family. While I know that it did not increase the length of my life, I feel certain that my choice of CPM drastically increased the quality of my life.