BRCA Gene

Personal Blog: A Benefit of Uncertainty

By: Paulina Tein

My pediatrician looked up at me, told me everything looked good, for now, and then said, “We have to talk about BRCA, and if you're ready to get tested.” I was 12, sitting on the exam table. His clicking away on his laptop, the smell of rubbing alcohol, the crinkly paper I was sitting on - all of a sudden, it all bothered me. I was not ready to be tested. But that visit was my formal introduction to my genetic risk for breast and ovarian cancer.

I had always been familiar with the term “BRCA.” My mom was diagnosed with aggressive breast cancer a few months after I was born. My earliest memories are about life with breast cancer: peering from behind my mom’s legs on stage at Race for the Cure; sitting in our dining room and wondering why all the women around the table were wearing wigs. But I did not know what it meant for me.

People with the BRCA1 mutation have up to an 85 percent chance of developing breast cancer, and up to a 60 percent chance of ovarian cancer. My mom has BRCA1, and I’ve grown up knowing that my chance of inheriting it is 50-50. Ashkenazi Jews also have an increased risk of 1 in 40 for carrying a BRCA gene. I’m called a “previvor.” Up until now, I haven’t felt ready to be tested. So, I had to form my own relationship with BRCA, and somehow be at peace with the risk.

For a while after that doctor’s visit, I thought being a previvor meant being scared and anxious. Maybe conducting monthly breast exams for lumps would ease my fear of cancer. What would a double mastectomy be like? Would it make me feel less feminine? Would I ever be able to have children? But as I worried about these scenarios - testing positive, lying in a hospital bed, chest wrapped, nauseated, exhausted - I noticed how none of them actually happened. No lumps, no surgical procedures, no chemotherapy. Worrying made me anxious. Worrying didn’t bring me peace or make me feel confident in my ability to face cancer.

For me, it has been helpful to think back on other stressful experiences that I have survived. Two summers ago, I did a whitewater kayaking wilderness survival course. Hitting a wave at the wrong angle meant being stuck, upside-down, in freezing rapids. But then I practiced the “wet exit”: relax, unhook the splash skirt, and swim out. I loved kayaking. Flipping still scared me. But I knew that if I flipped I could survive.

When I turned 18, I knew it was time to take the BRCA test. I feel, as I enter adulthood, that knowledge is power. I am confident in my ability to handle adversity-I’d been practicing.

A few days ago, I got the results back: POSITIVE. It is very likely I will get cancer without preventative measures. But I’m not scared. I’m proud of my bravery and I am now part of a new community (of Previvors) in a position to help other people take on the BRCA test and other confusing female health matters. I actually feel like this process has given me a clue about who I am and what I want to do. I feel strong and I want to learn more about female reproductive health.

It’s a personal choice when to take the test, and there is no ideal time to take it. There will always be other things going on in your life. It’s important to be confident in your ability to handle the stress of taking the test, waiting, and getting the results.