Adrienne Moore knew something was wrong. After being diagnosed and successfully treated for ovarian cancer a decade earlier, she recognized the pain and bleeding she began to experience during intercourse, and the sudden irregularity of her periods, as signs of a potentially serious problem with her reproductive health.
Moore, a 45-year-old respiratory nurse from Atlanta, was terrified that her cancer had returned. But when she sought help from her doctors in 2012, she left her appointments with a series of misdiagnoses: perimenopause, cysts, fibroids. “Being in the medical world, I thought I knew how to communicate with my caregivers,” she says. But even as she pressed her fears, it felt like no one was listening.
She returned to her doctors repeatedly over the next three years, but her symptoms didn’t improve. When her employers switched her health insurance plan, and her monthly premium jumped, Moore became unable to afford specialist care. As the pain grew unbearable, she requested sick leave from work. Instead, she was laid off. Her family paid out of pocket for scans and tests that Moore herself ordered. Still, doctors found nothing wrong.
But growing in Moore’s pelvic cavity, across her ovaries and into the endometrium—the lining of her womb—was a disease that could kill her.
Endometrial cancer is the most common type of gynecological cancer in the United States. Four times more common than cervical cancer, and the fourth most common cancer in women, it’s one of the few cancers in the country for which diagnoses and deaths are on the rise. The American Cancer Society estimates that at least 57,000 women will be diagnosed this year, and more than 11,000 will die.
Black women are just as likely to get endometrial cancer as white women, but they are more likely to die from it. “Within every age, within every stage of diagnosis, within every tumor type, Black women do worse,” said Dr. Kemi Doll, a gynecologic oncologist at the University of Washington.
Doll has spent the past seven years researching gynecological cancers and investigating the cause of the disparity. She believes that, as with racial discrepancies in other medical conditions, the difference in the endometrial cancer death rate is the result of how the medical establishment treats Black women.
To start, Black women are less likely than white women to receive an early diagnosis for the disease. As a result, thousands discover they have the cancer only after it has spread, when they have less chance of survival.
That could be because doctors miss early signs of the disease, or because many Black women are more reluctant or less able than their white counterparts to seek help from doctors. For many Black women, confidence in the health care system has been undermined by decades of difficult experiences. Studies have found that doctors are more likely to view Black patients as medically uncooperative, and that diagnostic and treatment decisions are influenced by patients’ race. Black patients consistently report higher levels of dissatisfaction with their care and mistrust of their doctors. Doll said that patients she speaks with frequently describe feeling dismissed, ignored, or overwhelmed. “If you consider a Black woman in the U.S. who has had a lifetime of experiences of subpar reproductive health care,” Doll said, “it might not be that a couple of drops of postmenopausal bleeding has you running to the doctor.”
And even those, like Moore, who seek help early for endometrial cancer receive less aggressive care. A recent study conducted by Doll’s team found that Black women with health insurance or access to medical care were less likely than white women to receive biopsies that could confirm their cancer earlier. Another found that 40 percent of the Black-white mortality gap in endometrial cancer may be due to inequitable surgery rates: Research shows that Black women are less likely to receive surgery than white women at every stage of the disease, and they are also less likely to receive chemotherapy.
For more about why this disease hits us so hard, go to Mother Jones.