Breast cancer battle is tougher for blacks
UNION CITY, Ga. — When Felicia Mahone was 27, she felt her breast and found a mass. Breast cancer had killed nearly all the women in her family — her mother, two aunts and two cousins. Her doctor, though, downplayed the lump, assuring her that everything would be all right.
For months, Mahone resumed her busy life. But she couldn’t shake the feeling that the lump might be a tumor. She saw another doctor at Grady Memorial Hospital in Atlanta. There was more testing, more nervous waiting. Finally, a biopsy confirmed her deepest fears: stage two breast cancer. Daunted by the prospect of facing cancer without family support, she made a vow to God: Get me through this, and I’ll help others not to go through this alone.
Treatment advances have improved breast cancer survival rates among all U.S. women, but the disparity between white and black women has grown: Black women such as Mahone are 40 percent more likely to die from the disease than white women, according to the Centers for Disease Control and Prevention.
No region has as many highdisparity states clustered together as the South. Louisiana and Mississippi have the highest racial disparities in breast cancer mortality. In both, the excess death rate among black women is more than 60 percent, according to the American Cancer Society. Alabama, Arkansas, Georgia, North Carolina, South Carolina and Tennessee all have excess death rates over 40 percent.
“We automatically think that, when we get cancer, we’re doomed and that it’s a death sentence,” said Mahone, referring to black women. “We don’t talk about cancer, don’t share it, don’t embrace our hair falling out and don’t want to look sick. So many other women, though, are living for years.”
‘Perfect storm’
Though black and white women have similar mammogram screening rates and black women have a lower overall incidence of breast cancer, black women are more likely to die from the disease. In explaining the disparity, one oncologist described a “perfect storm” of scientific and social forces.
One of them is that researchers haven’t developed advanced treatments for a series of aggressive tumors — known as triplenegative breast cancer — that black women are more likely to get. Another is that recent advancements in cancer therapies for other kinds of tumors have yet to be fully proved in minorities, in part because of the lack of diversity in those clinical trials.
And black women have described feeling cast aside by a health system of doctors, nurses and support groups that rarely look like them, and they face further obstacles outside labs and hospitals — including lack of access to jobs, transit and health insurance. This marginalization of black women is especially prevalent in the South.
“This makes people, especially black women, who are busy working and providing care to family members, not want to waste their time,” said Alisha Cornell, who worked as a registered nurse in North Carolina. “The way we are treated makes us feel shameful or unimportant.”
Federal officials have taken some steps to reduce this disparity, from awareness campaigns to collecting long-term health data from minority communities. Alabama officials have mandated that low-income women diagnosed with breast cancer be automatically enrolled in Medicaid. And Tennessee officials have used health data to identify counties with the highest disparities and have convinced hospitals to send mobile mammography clinics to those areas.
Eye-opening experience
Tiah Tomlin, a Georgia resident who once worked in the pharmaceutical industry, initially thought her triple-negative breast cancer diagnosis was a good thing. Then her doctors broke the news that her specific cancer, which disproportionally affects black women, was one of the hardest cancers to treat.
Triple-negative tumors don’t have the most common types of hormone receptors, estrogen and progesterone, and don’t produce too much of the protein HER2. Though her tumor tended to be more aggressive, she would not be able to benefit from the targeted therapies developed for other forms of cancer.
Tomlin — who was diagnosed at 38, before the recommended age for routine mammography screenings — ultimately survived. But her experience opened her eyes to the institutional challenges faced by black women with breast cancer.
“I didn’t feel like my voice was being heard as a patient,” Tomlin said. “The disparities are real. I wanted to know why.”
During her cancer battle, Tomlin sought out a community of women who shared her struggle. But in Atlanta, a city known as a black mecca, the groups she found were often full of older white women who couldn’t fully understand the challenges faced by younger black women.
In a 2014 review of studies on women diagnosed with breast cancer, researchers noted that women who negatively coped with their diagnosis — including emotional suppression and behavioral disengagement — “experienced increased levels of distress and poorer survival.”
“I wanted to understand what other young women of color without kids were experiencing,” Tomlin said. “Nobody looked like me. They’d answer the best they could, but they had never been a young brown girl and walked in those shoes.”
So she started a Facebook support group called My Breast Years Ahead. In that group, women from all walks of life can help each other through barriers that are medical — the pain, the treatment regiments, the side effects — and nonmedical — lack of transportation, costs of child care, unsupportive families.
“People won’t even tell their families that they have breast cancer,” said Cornell, the North Carolina nurse. “They die because of a fear of going to the hospital, finding out something is wrong,and not being able to financially afford it or put your family in a bind. With that fear, we wait.”