Jeanette Meachem speaks out about breast cancer today because her younger sister, Joye Jordan, did not.
When Jordan, a single mom in her late 20s, found a lump in her breast, she went to a doctor who told her she was too young to have breast cancer and probably just had “lumpy breasts.”
She didn’t see a doctor again until she was 31. By then she had health insurance, but the lump had grown larger. A biopsy detected cancer that had spread beyond her breast, advanced to Stage IV. Jordan died about a year later, just after she turned 33 in August 2010.
“We have to speak up for ourselves and be our own advocates,” said Meachem, 45. “Being silent can kill you.”
Breast cancer navigators guide patients through the system, making sure they get appointments as early as possible and get financial assistance if they need it.
“The sooner you start the treatment, the better it is for the patient,” said Grace Sauzier, a navigator with Carolinas HealthCare’s Levine Cancer Institute in Charlotte, N.C.
Sauzier said it’s disturbing that many black patients get diagnosed late. “I always ask, ‘What was the reason you didn’t get in?’ Most … say, ‘We didn’t know where to go. We didn’t have insurance, or we didn’t know if anybody would see us.'”
That was true for Esther Craig, who found a lump in her breast in April 2013. Then 53, she was uninsured and waited a month before seeing a doctor.
By the time it was diagnosed, her cancer had advanced to Stage IV. Craig had to quit her job at a dry cleaners to pursue treatment – chemotherapy, a mastectomy and followup radiation.
Later, she was diagnosed with lung cancer and now receives chemotherapy. But she has been comforted by the support she received – to stop smoking, exercise and eat better – through Levine Cancer Institute.
“They had all kinds of free programs,” Craig said. “I could go and get my treatment and not worry about the financial part.”
Meachem’s story illustrates the disparity in breast cancer deaths between African-American and Caucasian women. The Centers for Disease Control and Prevention put the problem in stark terms in a 2012 report called “Vital Signs”:
Dr. Marcus Plescia, who previously worked at the CDC and co-authored the report, called it an indictment of our “bewildering” health care system.
People “don’t really understand what the options are, and they have a very hard time figuring out how to access what they need,” he said. “We don’t have highly organized follow-up systems that we ought to have.”
Many factors – from socioeconomic conditions to heredity – are blamed for the disparities in treatment and outcomes. Because there are likely multiple causes, there continues to be uncertainty in the medical community over which factors are more significant.
Some research is focused on genetics, because studies show black women who get breast cancer are often diagnosed with a more aggressive type, known as “triple negative.”
Others place more emphasis on social, environmental and historical factors that affect many African-Americans, such as lack of insurance, lower income, poor health and distrust of the health care system.
Until research clears up the mystery, Dr. Otis Brawley, chief medical officer of the American Cancer Society, pushes for more attention to “socioeconomic things that start adding up and become reasons for the disparity.”
“The one thing we do know is that we have a bunch of people who call themselves black who get less than optimal care,” Brawley said. “That’s a logistical issue we can fix.”
Among those studying the biology of breast tumors is Dr. Lisa Carey, chief of the division of hematology and oncology at the University of North Carolina Chapel Hill’s medical school.
In a 2013 study, Carey and her co-authors said “survival differences persist between blacks and whites (even when) diagnosed at similar stages of illness.” That suggests factors beyond late-stage diagnosis contribute to worse breast cancer survival rates in black women.
Carey was one of the first researchers to point out, in a separate 2006 study, that black women are at “substantially higher risk” of developing the aggressive “triple-negative” breast cancer than white women.
In triple-negative breast tumors, the three receptors known to fuel most cancer growth – estrogen, progesterone and HER-2/neu – are not present. That makes the cancer harder to treat because commonly used drugs such as tamoxifen and Herceptin are ineffective.
Once diagnosed with triple-negative breast cancer, blacks and whites have about the same outcomes. “It’s a bad disease for everybody,” Carey said. The question is why black women have a higher incidence of that cancer type.
Despite the recent attention to triple-negative breast cancer, it is relatively rare.
Carey is now directing her attention to the more common type of breast cancer. These tumors have receptors for estrogen and progesterone but not for HER-2/neu. This type of cancer can be treated with hormonal therapy, usually for five years after initial treatment.
For white women, the prognosis is good. But it’s not as good for black women, Carey said.
In the 2013 study, Carey and her colleagues concluded that differences in breast cancer outcomes can also be due to patient behavior and socioeconomic factors, such as poverty, lack of transportation, lower education levels and lack of insurance.
Although Carey believes biological differences are part of the reason for disparities, she agrees with the cancer society’s Brawley that they could be only a minor part.
“It may have everything to do with black women not (having access) to good health care in general,” she said.
Brawley is outspoken in his view that breast cancer differences should not be blamed on race and genetics.
To make his point, he first describes a study from Scotland, which found that poor women are more likely to have triple-negative breast cancer than other women. Part of the reason, he said, may be that poor women have higher calorie diets in childhood, weigh more, start menstruating earlier and have different birthing patterns than middle-class women.
“All of these factors … are risk factors for breast cancer,” he said. “Maybe we should look a little beyond race.”
Take obesity. Brawley said 50 percent of U.S. adult black women are obese, compared with 30 percent of white women. Obesity is a risk factor for breast cancer, especially in women over 50. It can also complicate treatment because chemotherapy doses have to be adjusted, and doctors may be reluctant to increase them adequately.
Brawley also points to a study based in Atlanta, where teaching hospitals provide a substantial portion of breast cancer care. It found that 7.5 percent of blacks and 2 percent of whites got no treatment in the first year after being diagnosed with “localized potentially curable breast cancers.” His point is that all women don’t get equal care, but black women are especially vulnerable.
Finally, Brawley cites a portion of the CDC report to support his claim that “race is likely not the reason” for breast cancer disparities: In Delaware, Nebraska and Rhode Island, black and white women have equal breast cancer death rates.
“The bottom line,” he said, “is we need to assure that all women have access to high-quality screening and high-quality treatment.”