The hardest part of living with the BRCA1 gene.
BY LYNDSEY WALSH
I’m young and perfectly healthy, but I’m waiting for the day when I finally get sick. While many of us are locked down in our homes due to the coronavirus pandemic, it may feel like the world is currently sharing a collective period of waiting. However, I’m not waiting for sickness from a virus.
I am waiting to find a lump. I am waiting for my test results. I am waiting to elect to remove my breasts. I am waiting to have my uterus and my ovaries surgically torn away from my body. I am waiting for my medication. I am waiting for my doctor. The number of things that I am waiting for goes on and on. It has gotten to the point where I have found that my life is being taken over by the time spent waiting around for a sickness that may or may not ever overtake me.
I am not a hypochondriac, and I haven’t always been waiting to be sick. At 18, I was diagnosed with having a BRCA1 genetic mutation. By having this mutation, I am faced with some very unfortunate predictions about the future of my health. More than 70 percent of the women diagnosed with the BRCA1 mutation will develop breast cancer by the age of 80, and more than 40 percent of women diagnosed with the mutation have developed ovarian cancer by that same age. I am not one to gamble, but even I know that the odds aren’t in my favor. Instead, I have found myself waiting around for the day that I get cancer.
My waiting has left me acutely aware of how malleable my flesh is to cancer. Of course, it wasn’t really a surprise. As a teenager, I watched my mom go through her diagnosis and treatment for breast cancer. Even my younger sister has already undergone a prophylactic double mastectomy at the age of 22. Breast cancer has left both its literal and figurative scars on my family.
When I turned 18, it felt like I had no other choice but to get tested. My mother had received her genetic diagnosis during her breast cancer treatments, and my doctor informed me that there was an estimated 50 percent chance of inheriting the mutation from a parent. So, it seemed like it was “better to be safe than sorry,” since the mutation is known to have an impact on an individual’s ability to develop cancer regardless of how many copies of the mutation have been inherited. During this time, strangers and friends would tell me “it’s better to know”; “it’s better to be prepared.” There was never a conversation about any consequences that came from knowing. No one ever informed me about the issues with the laws, privacy, or health insurance.
Should I tear myself apart with preventative surgical procedures?
Shortly after being diagnosed with my mutation, I started noticing how it began to express itself in different facets of my life. My conversations with my gynecologist, which were awkward enough to begin with, now consisted of lengthy discussions about my not-yet-existing cancer. I was given a timeline about when it would be best for me to stop hormonal birth control, when to begin getting annual mammograms and MRIs, and when to undergo a bilateral prophylactic mastectomy. I was told that I would have to think ahead about my reproductive future and that it would be recommended to undergo a voluntary hysterectomy to remove my ovaries and uterus long before I reached the age of menopause.
To be honest, at 18, it was hard to look that far into the future, and it still isn’t easy. I live with a constant paranoia about any changes happening in my body. Any abnormal period or peculiar feeling in my breasts sends me directly to my doctor with a series of follow-ups and tests that are time-consuming, physically and emotionally invasive, and costly. However, I’ve been extremely fortunate with my reproductive health. While it hasn’t all been the magical twirling in white pants that is depicted in tampon commercials, I have been healthy. However, as long as I am healthy, I am always going to be waiting for the day I’m not…