Pharmacy specialist, BRCA2 carrier: ‘Genetic testing saved my life’
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Editor’s note: This is the second in a series of five stories from ASCO Voices, a session during ASCO Annual Meeting that focused on the human side of oncology.
CHICAGO — Brooklyn Olumba, PharmD, BcPs, discovered she carried a BRCA2 mutation shortly after a relative died of cancer.
Only in her mid-20s at the time, Olumba wasn’t ready to undergo a prophylactic mastectomy.
“I was young and, despite seeing what my aunt had gone through — despite being in the health care space — I never thought cancer would happen to me,” Olumba, an ambulatory care clinical pharmacy specialist at Memorial Hermann Southwest Hospital in Houston, said during her ASCO Voices presentation at ASCO Annual Meeting. “Let me tell you, ASCO family: Thinking anything in life can’t happen to you is one of the most dangerous ways to live.”
A few years later, Olumba learned that it could, in fact, happen to her.
A surveillance MRI revealed a suspicious area in the milk ducts of her right breast. Olumba chose to have the tissue biopsied, despite her physician’s belief that it would be “rare” for this to be cancer.
In March 2020, 4 days before a global pandemic was declared, Olumba received a call from her doctor.
“I had cancer,” she said. “I was diagnosed without any symptoms or signs, without a lump. I was 28 years old. This rocked my world.”
‘This is very important’
Olumba grew up in a rural Virginia town.
The family primarily ate food that they grew themselves, and health problems had been minimal.
“Many of my family members lived into their 80s and 90s, often without medical conditions — certainly without cancer,” she said. “Then that all changed.”
When Olumba was 22 and away at college, her mother called her in tears to let her know her sister — Olumba’s aunt — had been diagnosed with breast cancer in her late 40s.
“Unfortunately, like many in the Black community, she didn’t talk about her diagnosis,” Olumba said. “Because of that, we didn’t know if there was a genetic component to her diagnosis. We didn’t know what type of breast cancer she had, or really any information.”
Olumba’s aunt died within 5 years of her diagnosis. It was a profound loss of a beloved family member, but it spurred another relative into action.
Olumba’s fraternal twin sister, Bethany, wanted to know what their aunt’s death potentially meant for her own health.
Bethany scheduled a doctor’s appointment and, for the first time, checked the ”family history” box for cancer. After consulting with her provider. Bethany decided to pursue genetic testing.
“Because there wasn’t a substantial history in my family, she did have to pay out of pocket, but that didn’t stop her,” Olumba recalled. “I’m so glad she did, because she found out she had the BRCA2 mutation.”
Bethany was stunned by the news. She took a bit of time to process its potential implications but, within a few months, she was back to being proactive.
She scheduled an appointment with a genetic counselor and began biannual screenings in the form of breast MRI and mammography. Perhaps most importantly, she shared every test result with her sister and the entire family.
“At the time, I was a broke college student, and my insurance didn’t cover the genetic testing. They said I had to have an identical twin sister for them to cover the test,” she said. “So, I put it off, but with every screening my sister did, she would call me with the results, and she would say, ‘My results are good, but don’t forget, this is very important.’”
After Olumba finished school and secured her first “big girl job” at age 25, she finally pursued genetic testing. The test revealed that she, too, had the BRCA2 mutation.
A few years later, she was diagnosed with stage 0, double-invasive carcinoma of the right breast.
“Because of my risk, I opted for the double mastectomy,” she said. “Later, surgical pathology upgraded my staging to stage IB after they found some invasive lobular carcinoma and some positive sentinel lymph nodes not originally seen on screening. I had to act quickly.”
A life-saving test
Olumba underwent 4 months of chemotherapy, 28 rounds of radiation and two additional breast reconstruction surgeries.
“I never thought this would happen to me, but genetic testing gave me an opportunity to start this process early,” she said.
Olumba was living alone at the time, but Bethany — working from home due to the pandemic — came to take care of her twin sister during her active treatment.
Then Olumba returned the favor.
“Once I was finished with my treatment, I went and did the same for her,” Olumba said. “[Bethany] also underwent a prophylactic double mastectomy, further reducing her breast cancer risk.”
Looking back, Olumba believes it would have been highly unlikely she would have discovered her breast cancer on her own at age 28 She wouldn’t have had her first mammogram until several years later and, as a busy young professional, she wasn’t focused on monitoring her own breast health.
She is convinced that if it weren’t for her aunt’s diagnosis and her sister’s diligence, her outcome might have been very different — particularly given the persistent racial disparities in breast cancer genetic testing.
“We all know that breast cancer mortality rates are much higher among Black women compared [with] white women, and that it’s typically found at younger ages,” she said. “However, Black women are one of the most underrepresented groups when it comes to genetic testing. White women are almost five times more likely to be referred to genetic testing and counseling.”
Olumba said she is grateful to have had access to the lifesaving, actionable information she gained through genetic testing. She urged clinicians to explore this option with patients who stand to benefit from it.
“I hope my story encourages you [to] talk to your patients, your colleagues, your family members and your friends about genetic testing,” she said. “Until we can reach true equity in this space, we know that early detection saves lives, and genetic testing is a great resource for early detection. Genetic testing saved my life.”
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Olumba B. Genetic testing saved my life. Presented at: ASCO Annual Meeting; May 31-June 3, 2024; Chicago.
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