What I did with my ticking time bombs

A few posts ago I talked about the BRCA genetic mutation and what it meant to have it. After finding out that I had the BRCA2 genetic mutation and knowing that my lifetime risk of cancer was as high as 70%, I knew I'd have to do something. The preventative measures available to me were increased screening (check), living a healthy lifestyle (mostly check), chemoprevention drugs like Tamoxifen (which could reduce my risk up to 50%), or surgical options, including a prophylactic mastectomy (reducing my risk by about 90%). Note that even a prophylactic mastectomy cannot eliminate risk, but it is statistically (and intuitively) the most effective way to reduce risk. See the chart here about relative risk reduction: 

I was in no hurry to do anything about this until I was done bearing children (again, I still haven't even started!), mostly because a prophylactic mastectomy seemed drastic, and research indicates Tamoxifen must be taken for 5 consecutive years to receive the preventative benefits, and you are not able to have children while taking it. The prospect of me having children in the next 5 years was not unlikely, so I didn't really think it was a good idea. 

In Sept 2010 my sister was diagnosed with a metastatic tumor on her liver. After that, it's no surprise that things became much more real. I still never imagined that her disease would progress as quickly as it did, and I never envisioned our relationship having an expiration date. We continued to discuss what I should do about my risk--Megan was always very concerned for me. I am so grateful that she had the energy to care about me and help me learn a lesson from her crappy situation. 

Next in the spring of 2011 my Aunt Maureen gave me a book, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions. To say this book was written for someone exactly like me is an understatement. The book very logically lays out exactly what someone in my position (knowing their high risk, but not actually having cancer) is facing and the options available, through the stories of 5 women. Looking back, this is what put the seed in my head for a prophylactic mastectomy. 

I also started becoming involved in Bright Pink, an organization for people like me, at high risk for breast and ovarian cancer, focusing on education, prevention, and empowering young women. Before this, I kind of felt alone. My sister was dealing with a lot, and I didn't want to selfishly detract from that, but what I was feeling was pretty serious too. The organization is based in Chicago, and the day I went in for volunteer training, we actually met the founder, Lindsay Avner. Talk about driven, this woman had a prophylactic mastectomy at the age of 23, because of her own high risk, and started a nonprofit for people like herself in 2007. Hearing about her story, I knew it wasn't such a drastic or crazy thing to get a mastectomy at my age. 

Talking with my sister about getting a prophylactic mastectomy after my first Bright Pink meeting, she thought it was worth it. It seems like an easy decision when the facts are all laid out, but even Megan struggled with her decision to get a double mastectomy. She would never come right out and tell me what to do, although she had been asking me to look into taking Tamoxifen a lot more. I wasn't going to wait until I had kids anymore, I told her my plans, and she told me she was happy to hear it. 

Unfortunately, the seed that was planted grew into a fully formed plan after watching my sister go through a sharp and quick decline. Every time I saw her after the liver mets, she seemed weaker. Conversations turned from planning a trip to Chicago, to her imminent death. It's not easy to talk with your 29 year old sister about how she knows she's going to die. Maybe not tomorrow or next month, but inevitably. I never thought we would lose her so quickly, but she succumbed to her cancer on Sept 1, 2011. After that, there was no way I could watch my sister take her last breath because of this ugly disease and not do everything in my power to prevent the same thing happening from me. I feel somewhat selfish about this fact, but I know I am lucky to be armed with the knowledge of my risks.  On the car ride to the airport the next day, I talked to my stepdad about it, and was 100% convinced that the surgery is what I needed to do. 

When I talk to people about it, I say that it didn't really feel like a decision at all, I can't imagine not doing it. Still, it is a big decision. My sister even waffled a bit when deciding whether or not to get her breasts removed, even knowing she had cancer and she was also a genetic mutation carrier. She ultimately did, but it's not a decision to be taken lightly. It's a major surgery with serious possible side effects. I no longer have feeling in most of my breasts and armpits. I can never breastfeed my children. They look good, but they're not mine. But ultimately, I figured if I had a really high risk of getting cancer at some point and would have to get a mastectomy anyways, why not control the timeline.