How I wish people talked about living with a BRCA mutation

The word previvor is a blend of the words “pre” and “survivor.” It was created in 2000 by the nonprofit Facing Our Risk of Cancer Empowered (FORCE) in response to a user on a FORCE message board who wanted a label to describe what it was like to not have been diagnosed with cancer, but to have a genetic mutation that would increase her risk of developing cancer. From that discussion came “previvor,” defined as an individual who has survived a predisposition to cancer but hasn’t yet had the disease.

I technically became a previvor in June 2014. I underwent genetic counseling and testing, where I learned that I carried a BRCA2 gene mutation, a hereditary gene mutation that elevates an individual’s lifetime risk of developing numerous types of cancer, particularly breast and ovarian cancer. Because of my family history, specifically the fact that my mother had breast cancer for the first time when she was 28 and a second diagnosis of triple negative breast cancer in her 40s, I made the decision to have a preventative double mastectomy in December 2014. That dropped my lifetime risk of developing breast cancer from 69% to less than 5%.

In many ways, I thought that having my mastectomy would be the end of my BRCA journey. However, in the four and a half years since my diagnosis, I realized that I’m at the beginning.

Because having a BRCA mutation elevates my risk of developing ovarian cancer, every six months I undergo a transvaginal ultrasound and I have to submit bloodwork for a CA125 test, which is used to monitor for early signs of ovarian cancer. Once a year, I visit a dermatologist and an ophthalmologist to check for any signs of melanomas. I recently started seeing a specialist to monitor my risk of developing pancreatic cancer. And when I turn 35, I will start having annual colonoscopies to monitor for potential colon cancer.

Given these numerous medical interventions and the fact that scientists are still learning about the full impact of carrying a BRCA mutation, I’ve started to feel that it’s inappropriate to call myself a previvor. Having a BRCA mutation is something that will likely have to be monitored for my entire life. The question of whether I survive my predisposition for cancer feels like something that I have no way of knowing, so to say that I’ve survived my predisposition for cancer almost feels like tempting fate.

I’ve also come to dislike the term previvor because I worry it limits the range of emotional responses that individuals with an elevated risk of developing cancer are allowed to express.

It has been well documented how survivor culture in the breast cancer community can sometimes keep patients from expressing the fear and anxiety associated with their diagnoses, pressuring patients into needing to feel strong and positive. I worry that the term previvor can lead to a similar problem in the BRCA community.

After learning about my BRCA mutation status, I experienced a wide range of emotions. Part of me felt relieved to know, and part of me was equally racked by depression and anxiety. I worried that my mutation status would limit my ability to find a romantic partner, and I was scared of undergoing surgery. I hid my feelings from my family and friends because so many people told me that I now had the knowledge to “beat cancer before it beat me!” It wasn’t until I started seeing a therapist a few months after my surgery that I realized how depressed I was.

Finally, as I’ve spent more time in previvor communities, both online and in-person, I can’t help but notice the lack of diversity among participants.

Numerous studies have found that women of color are underserved by genetic counseling and testing, which means that they don’t have the same chance as white women to be a previvor. As a Black woman and an advocate for increased awareness of genetic counseling and testing in my community, it feels wrong to use a label that is not equally accessible to all women.

For now, I’ve decided not to use any term or description to characterize my BRCA status. Maybe that will change as I continue on my BRCA journey, but for now being label-less is good enough for me.