Sandra Yates knew.
As soon as she felt the pea-size lump in her breast, she was sure it was cancer. Still, she refused to acknowledge it. She wouldn't go to the doctor. She didn't tell anyone.
It would be nearly nine months before she told herself it was time to act. By then, the lump was the size of a small egg. The diagnosis was Stage 3 breast cancer.
Yates, a witty, fiercely independent woman who raised two daughters on her own, doesn't seem the type to back down from a challenge. Doctors and advocates say the fear that kept her from acting quickly is all too common among black women. It is among the factors that contribute to a disturbing trend: Although they are less likely than white women to get breast cancer, black women are more likely to die from it.
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The difference in mortality began to emerge in the early 1980s. By 2007, according to the American Cancer Society, even though rates for both groups were going down, death rates were 41 percent higher among black women than among white women.
Some health care professionals and advocates contend that the disparate mortality rates argue for a more urgent effort to reach more black women. They are frustrated that, with all of the information available about the importance of early detection and treatment, the statistics remain so dire.
In a survey focusing on black women by The Washington Post and the Kaiser Family Foundation, 75 percent of black women rated their health as good or excellent, about the same percentage as white women, black men and white men.
Health data, however, tell a different story. Across the country, women of color report higher rates of disease and health problems, are more likely to be uninsured and have had fewer doctor visits for preventive care. A 2009 Kaiser study noted "consistently higher rates of health challenges among black women, ranging from poor health status to chronic illness to obesity and cancer deaths."
For breast cancer in particular, experts cite additional factors: Black women often get their diagnoses at later stages and appear to be more susceptible to aggressive tumors. They also have a higher rate than white women of a diagnosis before age 40.
Income is a significant factor. A 2008 review of scientific literature on breast cancer stated: "Poverty is associated with poorer breast cancer outcomes for all Americans, regardless of race." However, the researchers said, "because a larger proportion of African-Americans than whites live in poverty, blacks are more likely to face poverty-related barriers," such as lack of primary-care physicians, poor access to care and a lack of information. Other studies show that black women are vulnerable to worse outcomes even after controlling for income.
Regina Hampton, a surgeon who specializes in benign and malignant breast disease, works with the Capital Breast Care Center in the District of Columbia, which serves uninsured women, and she runs a private practice, where she sees many women with good health care coverage.
In both settings, she said, "a lot of women come in at later stages, ... and what I hear from my patients is they're all afraid."
Besides the fear that most women have that the disease will rob them of femininity or sexuality, Hampton and others think black women also carry angst stemming from a historically unhealthy relationship between blacks and a medical system that was inaccessible. Often lacking the money or insurance for preventive care, many black people didn't seek medical help until they were seriously ill.
Cancer of any kind was viewed by many as certain death, because most of the people they knew who had the disease died. Hampton says some patients still bring up an old myth advising against cancer operations for fear of spreading the disease.
Breast cancer, she said, "is the most treatable female cancer that we have. I think one of the challenges is getting people to realize that the survival rates are very good for breast cancer if you present early. I think that message has not resonated through our community."
Yates, 53, said that once she got her diagnosis and learned that she could fight the disease and most likely beat it with an aggressive treatment plan, "I felt immediately empowered. Immediately."
Eleanor Hinton Hoytt, president and chief executive of the Black Women's Health Imperative, addresses the disconnect between what black women say and what statistics show in a new book, Health First! The Black Woman's Wellness Guide.
"Black women invariably put on a mask. We deny our pain, grief and sorrows because we want to project an image of what I call being OK to the world and to our families and community," she said. "We put that veil over what bothers us because so many others depend on us being in good health or being OK."
Many of the findings of the Post-Kaiser survey support Hinton Hoytt's assessment. Black women were more likely than white women to report being worried about losing their jobs, not having enough money to pay their bills, being a victim of a violent crime and being discriminated against. They are more often responsible for their elderly relatives' financial needs and more likely to provide child care for family and friends.
Black-oriented radio and cable television networks run public service announcements about diabetes, hypertension, and the dangers of HIV and AIDS. But aside from the month of October, or leading up to major fund-raising walks, breast cancer is rarely discussed in media targeted to the black community.
Karen Eubanks Jackson, founder of the Sisters Network, a national organization of black breast cancer survivors, suggests that black women have not had a prominent role in the breast cancer movement. White women, she said, see themselves depicted in the media as survivors. "They champion each other as survivors. It's very difficult for an African-American woman to open a magazine and see someone saying, 'I'm a survivor.' "
Jackson, an 18-year survivor, said she founded the organization because there was no national voice to speak to the disease's disproportionate effect on black women.
The Susan G. Komen for the Cure foundation has a program called the Circle of Promise, which recruits black women to share information with other black women about the disease.
"We think that, like so many things, we value the information of our peers. That's the philosophy behind the Circle of Promise," said Susan Brown, director of health education for Komen. About 110,000 women have signed up as "ambassadors."
Nothing suspicious had shown up on Tiffany Mathis' mammogram in January 2011, but six months later, during a self-examination, she found an unusual lump. She didn't panic, because the texture of her breasts is normally lumpy, but she decided to check it out. Her doctor determined that it was a malignant tumor and, after more tests, that she had triple-negative breast cancer, meaning it lacked the receptors that fuel most breast cancers and thus would not be responsive to certain treatments.
"It was surreal," Mathis said. "For three days, I was literally trying to plan a funeral." Her husband and daughter, who researched the disease and told Mathis that most women survive breast cancer, helped her focus instead on a battle plan.
Mathis, 43, whose cancer was discovered in Stage 1, had a lumpectomy last fall. She is undergoing chemotherapy. There is still "a tiny piece of cancer in me," she said, and doctors think it can be eliminated with radiation. Her medical team has told her that her prognosis is good.
Mathis said it is vitally important that women take ownership of their bodies and their health. Remember, she says, that she discovered the cancerous lump that the mammogram missed. "Knowing yourself and taking charge of your own health is so very important, especially for black women."