BRCA
What I’m about to say will ire almost anyone who reads this - doctors, genetic counselors, relatives of breast and ovarian cancer survivors, and probably most breast and ovarian cancer survivors themselves. But as a science enthusiast, someone who has always studied and worshiped the power that is medical innovation, my single biggest regret in the last year has been taking the BRCA genetic test. I suppose that the only person who would resonate with this would be another twenty-something hypochondriac that was also put on prozac three years ago due to their paralyzing fear of death at every turn. She subsequently has struggled with body image, and self worth since twelve years old, spending hours in therapy convincing herself that the body’s worth was not determined by how it looked, but its power in keeping her alive. For this girl, learning that her fear of death was never really impractical and her body was not in fact protecting her unraveled years of work like a spool of thread in a millisecond.
My father was diagnosed with the earliest stage of prostate cancer at 55 after the doctor found elevated levels of PSA during his yearly wellness exam. I had never been so grateful for the medical powers that be. His condition was so precancerous it would’ve never been caught before the first PSA test was developed in 1986. He was given the choices, to radiate, remove or just wait and watch, given how slowly the cancer developed. At the time, I was so relieved when he chose to take it out entirely, not leaving any opportunity for risk, as he phrased it. There were of course negative side effects and adverse impacts on his quality of life, but it felt like a no-brainer to use the information we were lucky to have and take the most aggressive approach. I couldn’t have agreed more - until I was sitting in a similar position.
After my dad’s diagnosis, his doctor encouraged him to see a genetic counselor to find out if there were any genetic mutations associated with his cancer. He did all the tests and promptly found out he was a BRCA1 carrier. Since he was already in his fifties and had nipped his cancer in the bud, this diagnosis didn’t offer much impact on his life - other than what it meant for his three daughters. Before 25, we were told each of us had to test for the mutation. My older sisters did immediately and each had a sigh of relief to find out they were negative. But after years of thinking that my indigestion was stomach cancer and my tension headaches were meningitis, I couldn’t get myself to take the test until the clock had almost finished ticking. After my 24th birthday I finally mustered up the courage to take it. And that courage was necessary given in just a few short weeks the results of the test changed the course of my life.
The first thing I was told when I received my positive results was that this was not a diagnosis. It is just information, my parents told me. While everyone kept telling me this did not equate to a death sentence, what they weren’t realizing is that what it did equate to was equally as daunting for someone with paralyzing anxiety: decisions.
When you are diagnosed with any genetic mutation of this sort, the first step is to see a genetic counselor. They are a statistician whose craft is predicting the winning numbers on the lottery card of your genetic fate. They tell you all the things you’re predetermined for, but then also what you can do to reverse the numbers. For a twenty-four year old BRCA1 carrier the options are endless, which initially offered great relief, and then almost instantly brought great dread. All of a sudden, just out of college and getting my footing on adult life, I was talking about egg retrieval, IVF, early menopause, hormone replacement, a double mastectomy. When you get this diagnosis everyone talks about how lucky you are to have this information and the privilege to be proactive. But nobody talks about how this information can also feel like an all consuming burden.
While I’m not a one issue voter, my vote always sat at the intersection of science and humanity: climate change, vaccines, people controlling their own bodies in line with their biological needs. But here I was staring at an issue of science versus humanity. I would now live the next fifteen years having to make decisions that would determine the likelihood of my survival, and the likelihood of any future child’s survival: how soon to get these preventative surgeries to work against time, if it was my obligation to share this information with a partner, if I would choose a BRCA free embryo to avoid putting another human through this experience. I was never even sure if I even wanted children. I was so confident that scientific innovation meant I could turn forty and make the decision when I was ready. Unsurprisingly to any woman not naive about their reproductive future, the decision was never really mine to make. Nature had made it for me, and scientific innovation had delivered the news like a baseball bat to the face.
I was so confident in my dad’s approach to do the most and increase his chances of survival. But here I was, making decisions not just on my length of life, but also the quality of it. I shamefully envied my grandma who got to have children, age naturally and at 75 had to deal with her triple negative breast cancer diagnosis. My father who got to marry, have children, and at 55 make his decision. I realized my fear was never really death itself, but the control I wanted to have over it. Now I had it, and it was too much.
I wish there was an upshot to this realization. A solution or some sort of profound piece of advice. There is not. It just sometimes helps to say out loud that right now, I hate being a woman with my biological clock ticking and the pressure to age with beauty. To love your body even when you’re so angry at it. To learn that it has in many ways failed you and it’s your role to be the captain saving the sinking ship. It helps to say out loud that I wake up many days wishing I didn’t have this information. Some days I still get to be free in my twenties and think about what bar I want to go to, and what outfit will make me feel great when I go. Others I panic that alcohol will only make my cancer risk higher, and that I will never feel good in any outfit after getting my breasts removed and reconstructed. But being a woman is also knowing that sometimes the cards are just dealt against you, and all you can do is say a loud fuck you to the universe and keep going. At some point everyone is just gambling with their life whether it’s with too much information, or not enough. And maybe with some good therapy and enough time I’ll wake up more days than not feeling lucky I get to know the numbers on my card.
