Episode #50: Erika Stallings
Erika Stallings is a music industry attorney and patient advocate based in NYC. In 2014, she learned that she carries a BRCA 2 mutation, which confers an elevated lifetime risk of breast and ovarian cancer. She underwent a double mastectomy in December 2014 to lower her lifetime risk of breast cancer to less than five percent. She regularly speaks and writes on issues relating to BRCA specifically on access to counseling and testing.
After undergoing a preventative double mastectomy in 2014, Erika Stallings told a therapist that she felt her life now had to have a lot of meaning. After all, she had just done this radical thing to save her own life. While not everyone with the BRCA gene mutation needs surgery right away, Erika’s doctor recommended that she proceed with surgery because her mom first had breast cancer at age 28. On today’s episode, Erika and I talk about why she didn’t immediately pursue testing after learning her mom has a BRCA mutation, how she coped with finding out that she does too (she had a 50/50 chance), and the racial disparities in genetic testing that negatively affect Black women in the U.S. We also discuss what it’s like to live in her body now, and how she navigated surgery and recovery with the help of some amazing friends and great doctors.
Here are some of the things Erika and I chatted about:
Her mother’s breast cancer diagnosis at age 28, and her second diagnosis in her mid-40s
Learning in 2007 that she had a 50/50 chance of having the same gene mutation as her mom
Why it felt important to her to be in a relationship or have some stability before going for testing
Once she decided to get testing, the hurdles she experienced when setting an appointment
Her doctor, Dr. Julia A. Smith, who recommended she have a preventative mastectomy ASAP
Navigating her own feelings around her results, but also her mom’s feelings of guilt about it
Using shopping to cope, and the idea that if she looked good, nothing could be wrong with her
The types of cancer, in addition to breast, that the BRCA gene mutation elevates your risk for
Using Angelina Jolie’s 2013 op-ed as a reference point when explaining her situation to people
The ways her friends stepped up to support her, including going to appointments with her
Dr. Tuya Pal’s research showing that Black women are under-referred for BRCA testing (a finding that’s been discovered by others, too)
The misconception that the BRCA gene mutation only affects people in the Ashkenazi Jewish population
How more diversity among genetic counselors could help reduce racial disparity in testing
The importance of knowing your family history and being aware of the NCCN Guidelines
The different options for genetic counseling beyond being referred by a doctor, including direct-to-consumer (like Color) and counseling by telephone
Her takeaway for people who have a BRCA mutation, but don’t want to jump to surgery
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