“It’s just a cyst. You’ll be fine. You don’t need a mammogram.”
Shontè Drakeford heard these words from her doctors several times, but they never quite put her ease. Shontè, a nurse practitioner, had never had any breast health concerns until 2009, when she noticed unexplained yellow discharge from her right nipple. She was just 25 at the time, so the chances the discharge was a sign of serious problem were low. But she had no intention of dismissing it.
“I wasn’t afraid to get checked out,” she recalled. “I knew that if you catch a health problem early, it’s easier to treat.”
Her doctor ordered an ultrasound, which revealed that Shontè had dense, fibrocystic breasts, but otherwise everything seemed okay. Though she trusted the doctor, she asked if she should get a mammogram just to be sure. No, the doctor said, as long as the discharge didn’t become bloody, she was fine.
But Shontè wasn’t fine. The nipple discharge persisted, and she saw blood in it a few years later. A painful cyst had started growing in her breast too. A surgeon removed the duct that was causing the discharge, but didn’t drain the cyst. A biopsy of the duct that removed showed she had intraductal papilloma, a benign tumor. She had other seemingly unrelated symptoms too: coughing and aches and pains, all of which she thought were stemming from allergies and sports injuries. Still, doctors told her she was okay and denied her requests for a mammogram. The surgeon recommended evening primrose to relieve the pain from the cyst.
By 2015—six years after she first noticed the discharge from her nipple—the cyst had become so painful that Shontè went back to the surgeon who, alarmed by her symptoms, sent her to a breast center for additional testing. Shontè would finally get a mammogram, as well as a biopsy.
The results were shocking. Shontè had breast cancer, and the news only got worse from there. Her doctor, concerned about Shontè’s other symptoms, ordered a CT and bone scan. Those tests showed she had metastatic breast cancer (MBC) or stage IV breast cancer, which meant the cancer had spread beyond her breast. In her case, her lungs and bones were affected, which explained her cough and body pain. Once breast cancer spreads to distant sites in the body, it is incurable.
“I thought ‘Oh my God I’m going to die,’” she said.
The diagnosis came at what should have been exciting time in Shontè’s life. Her early years had been challenging—she grew up in the foster care system and had lived in poverty—but she had beaten the odds. She had a career she loved and a supportive husband, Lavoisier, who served in the Army. Like many military families, they moved around a lot, but Lavoisier was transitioning to the Reserves so the two could settle down and start a family. After battling infertility, they were just beginning the process of adopting a child. Shontè was about to send a deposit to an adoption agency to get started, but she decided to hold off for a few days until her test results were ready.
Now, in an instant, her world had turned upside down. But she quickly learned her situation was not hopeless thanks to treatment advances made possible by research.
“I found an article that stated a person could live for 15 to 20 years with metastatic breast cancer,” she said. “You’d be on treatments for the rest of your life, but you could be stable for a while. And I thought to myself, ‘That’s going to be me.’”
Thankfully, Shontè would now get the excellent care she should have received all along. Her doctor started her on radiation and chemotherapy as well as a CK-4 inhibitor, a type of medication that helps manage MBC by slowing or even stopping cancer cells from growing. While MBC patients do eventually stop responding to treatment and switch to other therapies, the combination is still working for her almost 10 years later.
Naturally, Shontè was upset that her cancer could have been caught earlier when the prognosis may have been better. She’s not sure why her symptoms were dismissed for so long. Part of the problem may have been her age, she thought, since breast cancer mainly affects middle-aged and older women, though research has shown that diagnoses in women under 50 have been on an alarming rise over the last five years.
But she also wondered if race had something to do with it. Racial disparities are a serious problem in breast cancer outcomes, with Black women having a 38 percent higher death rate from breast cancer compared to white women. They’re also more likely to experience delays in treatment. One contributing factor is that Black women are more likely than white women to have inadequate health insurance or access to health care facilities, which may affect screening, follow-up care, and completion of therapy. But even though Shontè had been diligent about reporting her symptoms and had access to healthcare through the military, she was still dismissed until her cancer had progressed to stage 4.
“I thought that having a medical background would have helped, but that didn’t matter,” she said. “I worried that if I’d pushed too much for additional testing, the doctors would label me ‘difficult.’ And I shouldn’t have needed to think about that.”
Whatever the reasons for the delay, Shontè was now determined to share her experience to help others. She had noticed that even though there was a lot of media coverage and discussion of breast cancer, the stories primarily focused on white women with early-stage breast cancer. The lack of representation frustrated her, but it also inspired her to take action.
Shontè started working with the Tigerlily Foundation, an organization created by a Black woman, Maimah Karmo, that educates and provides support to young women with cancer. (BCRF has taken the Tigerlily Foundation’s #InclusionPledge.) She completed the organization’s advocacy training program and has shared her story at scientific conferences as well as at meetings of the Food & Drug Administration, Congress, and President Biden’s Cancer Moonshot.
“I think I’ve always been an advocate, but I just didn’t know of what,” Shontè said. “Getting cancer gave me a sense of purpose.”
Though she’s faced challenges, such as having to worker fewer hours at her nursing job and coping with symptoms like cognitive dysfunction, Shontè remains optimistic—and grateful for the advances in treatment that have given her more years to spend with her family and help others like her.
“Everything starts with research,” she said. “I’ve seen improvements in research since I’ve started advocating, and it’s very promising. Without it, I wouldn’t be able to get the kind of care I have now. I’ve already beat all the odds and statistics. I’m just going to keep going.”
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