For one woman with a BRCA gene mutation, information and teamwork brings a sense of control.
My head started spinning as I left my genetic coun­selor’s office. There was just one word from that session that rang in my ears: positive.
It was a word that seemed like it should mean something other than it does. Far from anything positive in the world, I had just learned that I am BRCA1-positive. Carrying this gene mutation means I face up to a 72 percent chance of developing breast cancer and up to a 44 percent chance of developing ovarian cancer in my lifetime.
Earlier that morning, I had been certain that the day would play out differently. After all, the odds were in my favor. How could three of my female relatives and I all draw losing tickets from this genetic lottery? I wasn’t nervous heading to the genetic counselor.
The office was tiny. The waiting room could only fit a couple of people. When my genetic counselor, Justin, called my name, I was relieved to get the show on the road. My 4-month-old twin daughters were home with my mother-in-law, and I was anxious to get back to them. It had been about two hours since I pumped, and I was acutely aware of my breasts. They felt like they might explode. How ironic. Justin was as serious as ever and was clearly uncomfortable with the small talk I was forcing. For a few moments he said nothing at all, and I felt my stomach leap. He slid a piece of paper toward me and began speaking. I did not hear a single word. All I could see were the words in capital letters screaming in my face: positive for a deleterious mutation.
I knew exactly what that meant, but at the same time had no idea what was ahead of me. In that single moment, my whole world shifted. Everything was different. A clear division was drawn in the timeline of my life — the period before I knew I was BRCA-positive and the period after. It isn’t that I regret opting for genetic testing. For me, the idea of not knowing was out of the question. But, when I first learned that I was BRCA-positive, it became all-consuming. I would remind myself that I was a perfectly healthy 27-year-old woman who did not have cancer. But I could not help but conduct breast self-exams at least three times a day. Any twinge of pain and I’d be off googling “cancer.” I was obsessed with the thought that I was going to get cancer, that I was going to leave my girls without a mother, and worst of all, that I may have passed on this gene mutation to them. Everything felt out of my control.
I began to read, absorb and devour any information I could find about the mutation. I ended up reaching out to my genetic counselor again to sit down and hear all the things he’d tried to tell me the day I received the news. We reviewed statistics and discussed all the information I had been reading. He helped me make sense of it, and he connected me with resources like Bright Pink, a nonprofit advocacy organization focused on early detection and prevention of breast and ovarian cancers. Bright Pink became and remains a tremendous resource for support in my life. I met with a lot of doctors and learned about all of my options. With each discussion, the dark fog that consumed me began to lift, and I started to feel like I was on a team. And my team had a clear, decisive strategy for offense on how to beat this gene. Perceiving that I had taken back some control allowed me to feel like I could breathe again. Once that happened, I felt like I could live again.
It has been several years since that day at my genetic counselor’s office. Looking back, I can see that so many of the things that I feared and felt were insurmountable are now my victories. As I look forward, I can see many more challenges that this gene mutation will force me to face. With each, I remind myself of my personal mantra: Learn as much as you can; control as much as you can; then, let go and breathe as much as you can. Being BRCA-positive can be really over­whelming at times, but having knowledge and a really great team can show you that you have options, which allows you to take control of your health, be proactive and feel empowered.