Maya Thompson always knew she came from strong women. Her grandmother fought ovarian cancer with quiet dignity, and her aunt's battle with aggressive breast cancer at 42 showed Maya what resilience looked like. But at 34, sitting in her genetic counselor's office, Maya faced her own challenge: positive test results for both BRCA1 and BRCA2 gene mutations, putting her at high risk for developing breast and ovarian cancer.

"I remember staring at those results, thinking about my aunt and grandmother, and feeling like time just stopped," Maya recalls. As a software engineer used to solving complex problems, she approached this life-changing news the way she knew best – by gathering information and analyzing her options.

Understanding her alternatives became Maya's first priority. Her medical team laid out three main paths: enhanced screening every six months with breast MRI and mammograms, medication to help prevent cancer (called chemoprevention), or prophylactic surgery – removing her breast tissue to drastically reduce her cancer risk. Each option came with its own set of implications that would affect her life in different ways.

"As a Black woman, I needed to know how these choices would specifically affect me," Maya explains. "I researched everything from keloid scarring patterns in Black women after mastectomy to how different reconstruction options would work with my skin tone. These weren't just medical decisions – they were decisions about my identity, my future family plans, and my life as a Black woman."

The benefits of each choice became clearer as Maya dug deeper. Enhanced screening would help catch any cancer early but meant living with constant anxiety between tests. Chemoprevention drugs like tamoxifen could cut her risk significantly, but came with side effects and hadn't been extensively studied in women with both BRCA mutations. A prophylactic mastectomy would reduce her breast cancer risk by about 95%, offering the most protection but requiring major surgery and a lengthy recovery.

Maya also had to weigh the consequences carefully. "I was planning to have children in the next few years. Would surgery now affect my ability to breastfeed? If I waited, was I taking too big a risk? These questions kept me up at night," she shares. She thought about surgical complications, insurance coverage, recovery time away from her demanding tech job, and how each choice would impact her relationship with her husband.

Finding support became crucial to Maya's journey. She connected with a support group specifically for Black women with BRCA mutations, where she found understanding she couldn't get anywhere else. "These women got it – they understood the specific concerns I had about scarring, about working with surgeons who had experience with Black skin, about dealing with family members who didn't understand why I'd consider surgery before having cancer."

After three months of research, support group meetings, and consultations with multiple doctors, Maya made her decision. She chose a staged approach that honored both her health needs and her family plans. For the next year, she would undergo intensive screening while trying to start her family. After completing her family, she would proceed with a nipple-sparing mastectomy and reconstruction.

"What I learned through this process is that there's no one-size-fits-all answer," Maya reflects. "The ABCs of health advocacy – understanding your alternatives, benefits, and consequences – helped me make a decision I feel confident about. I knew what questions to ask, what research to do, and how to advocate for what I needed."

Today, Maya is six months into her enhanced screening protocol. Her imaging results have been negative, and she's working with fertility specialists to plan her family's future. She continues to share her story, hoping to help other Black women navigate similar journeys.

"Knowledge is power, but knowledge with support is even better," Maya says. "Understanding all your options, being informed about how different choices specifically affect Black women, and connecting with others who share your experience – that's how we advocate for ourselves and make the best decisions for our health."

Black Women Wellnessing Blog

Carol J. Scott, MD, MSEd, FACEP