My Experience As a BRCA Mutation Carrier

Erika Stallings shares her journey with breast cancer

This article is part of Breast Cancer and Black Women, a destination in our Health Divide series.

Erika Stallings

Photo courtesy of Erika Stallings / Designed by Julie Bang / Verywell

Meet the Author

Erika Stallings is a lawyer, writer, and patient advocate based in New York City. In 2014, she learned that she carried a BRCA2 mutation and underwent a preventative mastectomy later that year. Her advocacy work focuses on raising awareness of hereditary cancer and genetic counseling and testing in the Black community.

My mom is the strongest woman I know, a two-time breast cancer survivor. In 1993, she was diagnosed with stage 1 breast cancer. This was before science knew that there are genetic causes or genetic links to cancer. 

She was 28 years old at the time, and I was too young to grasp the severity of the situation, but an 8-year-old can tell when her mom isn’t herself. She was constantly tired, randomly getting sick, and spent a lot of time going back and forth to the doctor undergoing chemotherapy and radiation. Everyone was tense.

After a year, she was deemed cancer-free, but cancer was like this looming presence. During self-exams, my mom would find lumps in her breasts that turned out to be scar tissue from surgery. 

I think she was scared because we understood that cancer could come back.

And in 2007, it did. This time it was in a different breast and a different diagnosis. She was diagnosed with triple-negative breast cancer (TNBC), a form of breast cancer that is more common in Black women, more aggressive, and less responsive to traditional chemotherapy treatments. 

Following the doctor’s recommendation, that’s when she underwent genetic tests, and she learned that she carries a BRCA2 mutation. BRCA2 is a hereditary cancer mutation that significantly increases the risk of developing breast and other cancers. 

Children of mutation carriers have a 50% chance of carrying themselves. So, I’ve known since 2007 there was a 50% chance that I was a carrier for the mutation. 

Getting Tested

Despite my risk, I avoided getting tested right away. I was busy living life: enjoying my senior year of college at the University of North Carolina at Chapel Hill, heading to Washington, D.C. for law school, and then moving to New York to work for a large law firm.

Before I knew it, I was 28 years old, about the same age that my mom was first diagnosed. I was also beginning a serious relationship with someone who had lost their mother to stage 4 colon cancer a few months before we met.

I knew I needed to get tested. Looking back, I’m a little embarrassed that I pushed it off because I always talk about the importance of health and screening. But when you’re young, you feel healthy. You don’t expect these huge hurdles to come up, even if you know you’re at risk. 

When you’re young, you feel healthy. You don’t expect these huge hurdles to come up, even if you know you’re at risk.

I tried to make an appointment for genetic testing at Memorial Sloan Kettering, but was waitlisted due to a shortage of genetic counselors in the United States. 

In June 2014, I got an appointment at New York University, which has a high-risk surveillance clinic, meaning they work with young women who have a high risk of developing breast cancer. I did some volunteer work for a breast cancer organization in New York City, and the executive director helped me get an appointment. If it weren’t for them, I would’ve had to wait another six months.

In July, I got the results. I had inherited the BRCA2 mutation. I knew it.

Researching

Immediately after getting my results, my doctor recommended that I have a preventive bilateral mastectomy as soon as possible, which reduces the risk of getting cancer significantly.

Doctors recommend treatment based on the age that your first-degree relative developed cancer. Since my mom was 28 years old when she was first diagnosed, the surgery was strongly recommended. 

It’s overwhelming, the idea of losing a body part, but getting a preventive bilateral mastectomy was the most logical decision for me based on my family history. 

I took every recommendation into account and did extensive research. I feel very close to my team, like we’re all in the trenches together.

In addition to my surgery, since the BRCA2 mutation also puts you at risk for ovarian and pancreatic cancers and melanoma, I started seeing doctors for bloodwork every six months, along with receiving transvaginal ultrasounds, and even eye exams. This was on top of preparing for surgery: finding and interviewing a breast surgeon, plastic surgeon, OB-GYN, gynecological oncologist, and every other doctor that would be a part of my team.

I took every recommendation into account and did extensive research. I feel very close to my team, like we’re all in the trenches together.

While preparing for surgery, I tried finding online support groups and articles from women like me: women of color, single, no kids, young. I didn’t see much. I felt very alone, which led me to write about my own experiences, so the next person like me won’t feel alone. 

I thought I would have been better prepared because I saw my mom go through cancer, but the appointments and bills were never-ending. 

Surgery

I had my preventative mastectomy in December of 2014.

Thankfully, I was able to get what’s known as a nipple-sparing and direct-to-implant mastectomy, which means I woke up with my new breasts and didn’t have to undergo another procedure. 

I took one month off of work, and my mom came to New York to help me for a week. It was weird. I was initially off-balance because of the implants. It took me about two to three months until I felt like myself again, physically.

The mental part took much longer, and I should have started seeing a therapist much sooner than I did.

I had undiagnosed depression at the time. It’s just so overwhelming for someone so young. I had never thought about death like that. I was the first person in my friend group to experience a significant life crisis. It’s not common for people my age to go through any type of crisis, much less losing a body part. So yeah, that could make you feel a little alienated. 

But my friends were amazing. They threw me a party after the surgery and sat with me at doctors’ appointments. And even though they won’t fully understand what it’s like, I’m incredibly grateful for my support system.

Moving Forward

My experiences led me to research disparities in breast cancer outcomes between Black and White women, as well as advocate for increasing awareness of hereditary breast cancer among women of color. 

In 2016, I co-founded the Young Leadership Council for the Basser Center for BRCA, which has raised about $150,000 to support research into cancers caused by BRCA mutations. We also hold educational events and panels for people affected by the mutation. 

Some people in the BRCA community call themselves “previvors,” you know you put “pre” and “survivor” together. I don’t love this term.

I think this is a chronic condition that we learn to manage. This way of thinking feels more empowering to me. I’m not just waiting for something to be over, I’m learning how to live with it. 

I just refer to myself as a BRCA mutation carrier. I like science. To me, that’s the most scientifically appropriate label. 

This stuff can be terrifying and really hard. Particularly because we know that a lot of Black women get diagnosed before the age of 50 and are more likely to have a BRCA mutation than White women, which also increases the risk for more aggressive breast cancers like TNBC.

Because our cancers are often diagnosed once they’ve progressed to a later stage, we need to have these conversations with our families. Black women have a 40% higher death rate from breast cancer than White women.

Many people have heard that statistic, but a lot of people don’t know about the disparities in genetic counseling and testing. It saved my life, and it shouldn’t be so unattainable for women of color.

Many people have heard that statistic, but a lot of people don’t know about the disparities in genetic counseling and testing. It saved my life, and it shouldn’t be so unattainable for women of color. 

I’ve enjoyed speaking and writing about my experiences. I think the educational part of this is so important. I even participated in the Breast Cancer Research Foundation’s “Research Is the Reason” storytelling initiative to give voice to young Black women who need to make tough choices like mine. The process can feel overwhelming and everyone’s story is different, but you’re not alone. 

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2 Sources
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  1. National Cancer Institute. BRCA gene mutations: cancer risk and genetic testing. Updated November 19, 2020.

  2. Richardson LC, Henley SJ, Miller JW, Massetti G, Thomas CC. Patterns and trends in age-specific Black-White differences in breast cancer incidence and mortality – United States, 1999–2014MMWR Morb Mortal Wkly Rep. 2016;65(40);1093–1098. doi:10.15585/mmwr.mm6540a1