Personal Stories

Melissa's Story

While I was growing up, my mom seemed to have a breast cancer recurrence every several years. She considered cancer to be "her" disease, but I felt a nagging suspicion that it might be mine, too. I saw a program on television about Hereditary Breast Ovarian Cancer (HBOC) syndrome and recognized the risk factors in our family. I made the decision that, should I have a cancer gene mutation, I would have a prophylactic mastectomy without reconstruction. Perhaps that decision came easily because my mom, after her cancer-related bilateral mastectomy, purchased prostheses and went on with life as usual.

Fast forward to my late 20s, in the year 2006. A doctor talked to my mom about BRCA mutations and convinced her to be tested. When my mom, sibling, and I ultimately all tested positive for the cancer gene (there's more than one, but we have the biggie), I felt relief that I'd already thought through the "what ifs" years ago and had made my decision — I would have a prophylactic bilateral mastectomy.

The oncologist deemed my mastectomies a "medical necessity," as did my insurance. And while my pathology came back clean for cancer, there were already some conditions beginning that would have, at the least, required biopsies for someone like me in such a high risk category.

My mom was never even remotely interested in reconstruction for herself. I can't say I didn't investigate it, though. I definitely did, because on the site I looked to for support everyone seemed to be seeking it. I learned about types of reconstruction on that site and also looked into reconstruction on other sites. But the more I learned, the more the information cemented my decision not to have reconstruction. I didn't even bother speaking to a plastic surgeon. Reconstruction just didn't interest me. The only thing that worried me (unnecessarily, as it turned out) was that my chest would be concave.

The "default" for doctors, especially toward people my age, seems to be to ask questions: Would you like to consult a plastic surgeon? Are you going to have reconstruction? Despite asking, though, my doctors didn't try to pressure me into anything. Having my mom with me helped. She knows me well and backed my decision not to have reconstruction. In fact, she was my staunchest advocate, partly because she had discovered a breast cancer recurrence in herself, post-mastectomy, and felt that not having reconstruction helped her find it easily.

There were many reasons I decided not to have reconstruction, among them seeing my mom do so well without it, not wanting a lot of surgery, and not wishing to deal with close surveillance and repeated exchange surgeries. My decision also stems from the fact that I was sick when I was younger, culminating in a serious illness during my teens. While my peers strove to fit in, I spent those formative years finding out what truly makes me who I am — my interests, my faith, my soul. My body is something temporal and has nothing to do with the real me. Once my bandages came off, that was it. I've gone flat ever since. After all, I looked this flat as a child and those were some of the happiest years of my life!