Scared of BRCA Testing? Me Too. Let's Talk About It.

I was two years old when my mother died. I learned grief before I learned how to walk, and for the past 16 years, I have learned how to live without the unconditional love of a mother. I have struggled through 16 Mother’s Days, 16 birthdays, and 16 years of recognizing that Halloween isn’t just a holiday for trick-or-treating and trading candy but also the night that my mother left the world and me with it. As I’ve grown up, memories of my mom have faded and become virtually non-existent. I remember the night she died, and not much else. 

Many years prior to my mother’s death, my maternal grandmother fought the same battle. It’s always seemed to me, and I’ve said this to multiple people, that breast cancer was going right down the family tree. I’ve never had a shadow of a doubt that eventually, it would be me in the hospital bed, and for so long I’ve used that as an excuse. (“Oh, grades don’t matter because I’ll probably be dead in 20 years.”) And so, despite already knowing that the chances of me testing positive for a BRCA (breast cancer gene) mutation are more likely than not, I am still so incredibly afraid. 

For so long, I felt alone in my fears. Today I’m taking back my control. Here are my fears, laid out for you on a silver platter. For all the young girls who are struggling with the fear of a disease that they cannot control, you are strong, you are brave and, Jesus Christ, you are not alone. 

My mom died when she was 38. I sit here as an 18-year-old college student, thinking about where I’ll be in 20 years. Will I be married with kids? Single and focusing on my career? Will I be traveling the world? Or, and this is the one that has always seemed very likely, will I be dying in a hospital bed? I know that the likelihood of me dying at the exact age my mom did is probably slim. But let’s pretend for a moment. Let’s pretend I only have 20 years left. That’s 20 more years to eat good food, to watch awful Netflix comedies and to do dumb things with my friends that will end up hurting us later. It’s 20 more years to fall in love, to get my heart broken and then to fall in love again. It’s 20 more years of sunrises and sunsets, summers and winters, falls and springs. Right now, although I am afraid, there is still a slim chance that I don’t have a BRCA mutation and that I have the same risk of developing breast cancer as anyone else. If I were to test positive for a BRCA mutation, only having 20 more years would feel a lot more likely.  

Friends who don’t understand have asked me why I wouldn’t get tested as if it was the dumbest thing they’d ever heard. They don’t understand what it means to test positive for a mutation that killed your mother. They don’t understand the guilt that I would feel if miraculously, by the grace of whoever is up there, I tested negative. But most importantly, they don’t understand that getting the test means knowing the truth. It means that I can no longer avoid researching double mastectomies and oophorectomies and egg freezing. It means that all of those things that I was afraid of are finally becoming real.

I have my own fears about mastectomies. In a way, I feel ashamed for being so afraid. There are so many beautiful women who are living in the wake of breast removal proudly and visibly. And of course, I know that not having breasts would not make me any less of a woman. But knowing that and feeling that are two different things. I am scared of what not having breasts would mean for my relationship with my body and the way I view myself. Would I feel less feminine? Would I feel ugly? Would I feel ashamed? And what about when I decide to get a reconstruction? Would I still feel like myself or would I just feel fake? These are questions that I’ve struggled with my entire life. Testing positive for a BRCA gene mutation means finally asking them.

A part of me is angry that not everyone has to grow up with the fear of dying. And, of course, I know that people can’t control their genetics, just like I can’t control the cards that I was dealt. I know that I am privileged to be able to afford this kind of testing and the medical care that comes after it. But still, I am angry. I am angry that the world is unfair and I am angry because my mom deserved so much more than she got. Mostly, I am angry because I have spent my entire life living in fear, and I have never been able to talk to someone who understood, who related to and who shared my fears. I never knew that what I was feeling was valid and real, maybe because I didn’t talk about it enough. In writing this, a weight has been lifted off my chest. To whoever is afraid, know that I am right there with you. One day, we will find a cure. But, until that day, I will remain afraid of what’s to come, and there is absolutely nothing wrong with that.