BReast CAncer gene, BRCA 1 and BRCA 2, are two different genes that produce tumor suppression proteins in our body. When either of these genes are mutated or altered and not functioning properly cells are more likely to develop genetic alterations that can lead to cancer. Inherited mutations in BRCA1 and BRCA2 increase the risk of breast and ovarian cancer.
Genetic testing is recommended for assessing inherited cancer risk. It was first believed that white women were the most frequent carriers of the gene mutation. But studies have shown that Black women have a mutation at the same rate as our counterparts. However, Black women are less likely to receive genetic testing and counseling and subsequent preventive care. BGA sat down with Erica Stallings, an attorney and freelance writer based in New York to talk about these disparities and her experience with BRCA2.
At age 29 Erica discovered she carried a BRCA2 mutation. That same year she underwent a preventive mastectomy to reduce her lifetime risk of developing breast cancer. Due to her experience, she went on to co-found the Young Leadership Council at the Basser Center for BRCA which brings together individuals in their 20s and 30s to raise money for research projects. In September 2020 she helped to launch Black&BRCA, a partnership with the Basser Center for BRCA aimed at increasing awareness of hereditary cancer in the Black community. Read our conversation below.
How long did you take to weigh your options after your diagnosis and why did you decide on the double mastectomy?
I learned in 2007 that my mom carried a BRCA2 mutation after she was diagnosed with breast cancer for a second time. Children of mutation carriers have a fifty percent chance of carrying the mutation as well. By the time I underwent genetic testing in 2014, I had known for a long time that carrying the mutation was a possibility.
When I got my genetic testing results, my oncologist recommended that I have a preventative mastectomy as soon as possible given my family history. I was 29 when I received my test results and my mother had breast cancer for the first time when she was 28 years old.
We know that the healthcare system fails Black women in several ways. It’s been discovered that Black women have higher rates of the mutation than our counterparts but receive less preventive care, what is your opinion on why this is the case and how can young Black women advocate better for themselves?
There is so much inequity built into our healthcare system and the disparities you see with respect to Black women and genetic counseling and testing access are a reflection of that. Specifically, I think there’s some provider bias at play. They may assume that Black women are not interested in receiving genetic testing although studies show that Black women are very interested when it’s offered to them.
I would advise all Black women to take the time to learn their family health history. If you have a family history of cancer, you likely need to start screenings such as mammograms and MRIs before the age of 40 and you may need to consider genetic testing. I always tell people that the patient/provider relationship is a partnership. If your doctor is unresponsive when you bring up risk for breast cancer, find a provider that will take your concerns seriously.
Learning that you were a carrier of the BRCA mutation and then having a double mastectomy at a young age, how were you able to mentally and emotionally push through this challenge?
To be honest I’m not sure that I did push through it. One thing I regret is that I only started therapy after my surgery and I wish I had started seeing one after I got the genetic testing results. I was so busy trying to be strong for everyone else (my mother, my friends, etc) that I didn’t take the time I really needed to process. As I mentioned making the decision to have surgery wasn’t hard for me but managing all of the appointments, navigating taking time off of work and my anxiety about dating post-surgery was a lot. There were so many days I would come home and just cry in my apartment because I was so overwhelmed.
What advice do you have for young Black women who may be concerned about dating post preventive mastectomy surgery?
When I first started dating I thought I could hide the fact that I had undergone surgery. That was a mistake. I think people can tell when you’re holding back information. So it’s understandable to be anxious but I think when you’re comfortable disclosing the right person is going to be understanding.
I believe that we can find blessings in the toughest of circumstances. What has been the greatest blessing from your journey?
I found a whole new voice as an activist. In 2014 if you had told me that I would be writing about racial health inequities or speaking and fundraising money for cancer research I would have laughed because I never envisioned those things as a part of my trajectory. So I feel blessed to have had the resources and privilege to even learn that I have a mutation, have a successful surgical experience and to be able to share my story with others.
What advice or resources do you know of for young Black women who learn they have a BRCA gene mutation? Are there support groups?
Last month in partnership with the Basser Center for BRCA, I launched Black&BRCA, an initiative to raise awareness of hereditary cancer in the Black community and to provide tailored resources and support to BRCA mutation carriers and their families. I was motivated to start this because after my diagnosis I didn’t see stories from Black women like myself and I want to create those resources.
Please visit Black & BRCA for more information and resources on BRCA and breast cancer.