What It’s Really Like To Live With The BRCA1 Gene

Photographed by Alexandra Gavillet.
I loved the X-Men cartoon when I was a kid. Loved it. As in, I watched it every Saturday morning with my brother, even though I had the distinct feeling that, as a girl, I somehow wasn’t supposed to. As in, I had the trading cards. As in, when the wind would pick up and I found myself alone in the schoolyard, I would throw my bike down, sprint across the playground and up a winding staircase where I would then thrust my tiny arms into the air, roll my eyes back into their sockets, and declare triumphantly to the eucalyptus trees chattering around me, “I am STORM! WIND: GO!” I pretended that I, alone, controlled the elements, exerting my dominance over them and using them for good. That show — and its mutants — made me feel powerful.
More than 20 years later, though, I got the call: I actually was a mutant. And no, it didn’t come with really cool superpowers. I had BRCA1 (an inherited genetic mutation that significantly increases the risk for breast and ovarian cancers), and I suddenly felt powerless. I'd known it was coming. I’d just spent the summer watching my mother go through the ups (can you really call them ups?) and downs of breast cancer, and after her diagnosis tipped our cancer count to 7/10 family members, her oncologist finally put 7 and 10 together and called for genetic testing. Turns out, our Norwegian lineage didn’t just give me my hard-to-spell name; it also gave us hard-to-beat odds of getting cancer: 87%, to be exact. With odds like that, something something Vegas. (Crowd roars with appreciative laughter at the comedic relief.) And while this gene only exists on my mother’s side, giving me a 50% chance of not inheriting those 87% odds of cancer, I did (as the oncologist told me in his best comforting Doctor Voice®) acquire the gene. I now faced the very real possibility — the near-guarantee — that I, too, would get the big C. Could be once, could be twice. Even thrice. Perhaps even four times, since "fourice" isn't a word. Because yes, not only was I almost resolutely assured of getting breast cancer in one breast, but my other breast was likely to get it later down the road, too. And then there’s the 40% risk of ovarian cancer. And the increased risk of melanoma. And hey, you know what? Uterine cancer, COME ON DOWN! You’re the next contestant on The Cancer is Rife! It’s no wonder that the cancer count in my family seems to outnumber actual family members. But despite this very grave revelation, a funny thing happened when I got the news. I had my breaking-down sobs, sure. I called my mom, my boyfriend, my dad, my best friends, all in a blur that makes it hard to remember the order of who got the news first. I hugged the pink ovary-plus-fallopian tubes plushy one of my closest friends had gotten me weeks earlier when I first found out that I might have the gene. (Thanks, Natalie.) I worried about my future, my life with my TBD husband, the kids that may never be. I worried about the hole that would be left inside me, metaphorically and literally, when I was forced to rip out my ovaries and uterus. It was terrifying and devastating.
But then, I heaved out a sigh, and I accepted it. And to my surprise, I felt grateful. I felt strong. I felt…relief. I was a mutant, and I really was powerful.

So much of the worst of cancer comes when you find out too late.

Because I realised that while I can’t control the changing winds like I dreamed of doing as a child, I can control what I do with this new information. I can educate myself. I can eat better. Exercise more. Use this as an excuse to move to one of the Blue Zone regions (those famously healthy areas of the world with unusually high concentrations of people over the age of 100), and live out my days surfing in Costa Rica, or meditating with cats in Japan. Now I know, and now I can do something about it. So much of the worst of cancer comes when you find out too late, but at this point, being proactive about cancer screenings is just part of my health maintenance. I have a yearly visit to the oncologist, and MRIs every three years. I know my breasts and keep an eye out for any changes. All of this…it’s just what I do now. And it’s okay. Knowing how likely it is that any one of us could get cancer, the fact that I know now that I am almost guaranteed to, and I will be very regularly and thoroughly screened for it — well (I rationalise), doesn’t that actually decrease my mortality rate compared to the average person? Sure, I have a higher than average risk of getting cancer. But maybe now, with this information, I actually have a higher than average chance of successfully beating it. Early detection is key. And I have all the tools to catch it. It’s like I just showed up with an unfair advantage against the rest of you suckers. This is Supermarket Sweep, baby. I’m Team 1. And I’m going straight for those motherfuckin’ turkeys. Besides, in all likelihood, given my family history and this type of mutation, I won’t be affected by this for another 20 years, if at all. By then I will have had kids and lived a long and super-sexy life. And my boobs will probably be down to my knees by then anyway. Having a prophylactic double mastectomy, oophorectomy, and hysterectomy might not be a big deal. Moreover, those prevention-oriented surgeries might not even turn out to be necessary. So much happens in science in 10 years, let alone 20. We might have new procedures, new therapies — hell, even a cure! We might look back at this era and shake our heads at how absolutely barbaric it was that we once recommended women lop off their breasts and cut out their reproductive systems just to increase their chances of living. It seems absurd even writing it out now. So for now, I hug my plushy ovaries. I give thanks for the healthy years I still have ahead of me. I warm up to the idea of seeing my oncologist more often than I see my bestie across the country, as much as I’d like that to be different. I appreciate the family and friends who surrounded me with love, resources, and encouraging words as this hurricane moved in. They may not be mutants like me, but they are superheroes in their own right. And I continue to be grateful that there are things that I can dictate — and that in the face of this storm, maybe, just maybe, I can still control the wind.

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