BRCA1+ carrier: Why I chose prophylactic surgery

I’m lucky. Because although I’ve worn the all-too-familiar MD Anderson patient wristband off and on since July 2015, I’ve never actually had cancer. And I have my doctor and MD Anderson to thank for that.

During a routine checkup several years ago, my physician asked if my mother had ever been tested for hereditary cancer syndromes. She knew that my mom is a 20-year breast cancer survivor whose family has a long history of that disease. So I asked my mother about it. Mom said she hadn’t ever been screened, so a few months later, she underwent genetic testing. And to our surprise, she tested positive for the BRCA1 mutation, which increases a carrier’s risk for breast and ovarian cancer.

What being a BRCA1 carrier meant to me

Knowing the risks of inheriting that genetic mutation, my sister and I decided to get tested, too. We reflected the odds perfectly — my sister was negative; I was positive.

As an engineer, odds are important to me. And the odds of eventually being diagnosed with cancer if you have the BRCA genetic mutation are high — far too high for me to risk it. That’s why I contacted MD Anderson right away, where I entered the high-risk surveillance program under Banu Arun, M.D. I knew I’d be tested at least twice annually there for both breast and ovarian cancers.

But as I approached my 40^th birthday this fall, I decided to have preventive surgeries, too: a prophylactic bilateral mastectomy and a hysterectomy. After watching a dear friend struggle with her own cancer journey, it was not a difficult decision. And with a husband and three beautiful children, my family was already complete, so fertility was no longer an issue.

Choosing surgery before a cancer diagnosis

People’s reaction to my decision was mixed. I did receive a great deal of support. But there were also questions like, “But, you’re not sick, right?” Or, “Are you sure you don’t want to wait for a cure?” And while I valued everyone’s opinions and was not shy about my challenge, in my heart, I knew that having the preventive surgeries was the right decision for me and my family.

Thanks to genetic testing, I had the opportunity to choose how and when I would deal with having the BRCA1 mutation, all without ever having to experience the stress of having cancer. So I had my double mastectomy in February 2016 and my hysterectomy under Karen Lu, M.D., in January 2017.

Staying informed and counting my blessings

Today, I continue to educate myself on research related to genetic cancers. Each of my children has the same 50/50 odds that my sister and I did of inheriting the BRCA1 gene, so I need to know as much as possible. That way, I can share what I know with them as they get older and support them should they ever face challenges similar to my own.

I also remain on a Phase II clinical trial under Dr. Lu called “WISP,” which explores the side effects of early hysterectomies. It’s important for me to participate, because the research performed by doctors at MD Anderson helps countless other people. And I want to do all that I can, so that the doctors can continue to learn the best ways to prevent and treat genetic cancers with as few side effects as possible.

I really am lucky. I’m lucky to have my family. I’m lucky to have my health. And I’m lucky to have a world-renowned leader in cancer research and treatment just minutes away, to ensure that I have a long time to enjoy them both.

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