Spring 2009: Dynamic Forces
Black women with breast cancer find support can help tilt odds in their favor
By Mary J. Loftus
Just being born black in America is a risk factor. African American infants are twice as likely to die as white infants.
Throughout the lifespan, striking disparities persist in the burden of illness and death experienced by African Americans, who are more likely to develop cancer than any other racial or ethnic group, according to the Department of Health and Human Services Office of Minority Health.
Breast cancer, however, is different: the rate of breast cancer in African American women is about 13 percent lower than in white women. Yet African American women have higher mortality rates from breast cancer. No one is sure why, although most experts say it is probably a combination of genetic and environmental factors.
Emory doctors and researchers are focusing on a few different parts of the puzzle. Associate Professor Ruth O’Regan of the Winship Cancer Institute (WCI) has been involved in groundbreaking research on race and triple-negative breast cancer, an aggressive type of breast cancer that affects African American women twice as frequently as white women. Triple-negative breast cancer also strikes at a younger age, so black women under age thirty-nine are especially hard hit.
The studies suggest that African ancestry plays a role, as it appears that women from Africa are at even higher risk than African Americans for triple-negative breast cancer.
Overall, through earlier detection and improved treatments, mortality rates among women with breast cancer have declined during the past several decades and five-year survival rates rose from 75 percent to 90 percent. Yet, says O’Regan in a paper she coauthored with fellow researcher Mary Jo Lund, “mortality differences between African American and white women have grown ever wider and survival for African American women today is equivalent to that of white women from twenty-five years ago.”
O’Regan believes this is partly because triple-negative tumors are more aggressive and difficult to treat, since they are not estrogen-responsive like many breast cancers. As codirector of the Jean Sindab Endowment Research Team, O’Regan and other Emory researchers are hoping to find out more about this dangerous subtype of breast cancer. One step has been to establish a repository of tumor specimens from all women newly diagnosed with breast cancer in Fulton and DeKalb counties.
O’Regan, medical director of the Emory Breast Center, also spends time at the clinic in the Avon Foundation Comprehensive Breast Cancer Center at Grady Memorial Hospital, helping to ensure that women there are receiving the same care as patients at Emory University Hospital and encouraging patients to take part in clinical trials.
The push for more minority health research needs to go both ways, says Sean Kimbro, a molecular biologist at WCI and former program director of the Georgia Center for Health Equity.
“We have such rich resources, with Emory Midtown and Grady Memorial hospitals, to study insured as well as uninsured African American patients,” Kimbro says. “Why is this still a topic that doesn’t get the level of consideration it should? We have a responsibility to make health disparity research a priority, due to our location if nothing else.”
Kimbro, whose own research focuses on the biology of triple-negative breast cancer, also mentors several Clark Atlanta University students. “We need to partner with the traditionally black colleges in and around Atlanta, encouraging African American students in health care programs who will be the next generation of scientists and doctors,” he says. “You’ll find they are the researchers who are doing the most work on health disparities.”
One of his mentees, Clark Atlanta graduate student Roni Glover, is researching reasons for the prolonged time between diagnosis and the beginning of treatment in African American patients as part of her work toward her PhD in health care social work. “When patients first hear the words ‘you have cancer,’ they don’t absorb much else the doctor may be trying to get across during the rest of the conversation,” says Glover.
This is why Associate Professor Lisa Flowers, an OB-GYN at Grady, takes the time to consider her patients’ needs, first and foremost. “There must be a multifaceted approach to dealing with health disparities,” Flowers says. “You have to meet the patients halfway.”
For Flowers, this means paying attention to herbal or homoeopathic remedies patients want to try or are using, while encouraging them to take traditional medications too. She works hard to build trust with her patients and their communities so they don’t feel dismissed.
Frankly, says Flowers, it helps that she is a minority doctor. “In the African American community, the doctor is the most important person next to the family,” she says. “I go out into the community, the churches, health fairs.”
African American patients have traditionally been suspicious of clinical research trials, she says, perhaps reaching back to the Tuskeegee Syphilis Study conducted between 1932 and 1972 in Alabama by the Public Health Service, which recruited four hundred black sharecroppers to study the natural progression of untreated syphilis.
Flowers finds if she asks her patients to participate in clinical trials personally, however, they will often do so. “Some of them, especially the older ones, will ask me, would you put your grandmother in this study? When I say, absolutely, they’ll say, well, then, sign me up.”
Increasing minority enrollment in clinical research studies is the best way to ensure that the results apply to all races.
Other effective methods to reduce health disparities are patient centered. A Grady outreach program, led by behavioral sciences experts Kimberly Jacob Arriola and Winifred Thompson in the Rollins School of Public Health, has specially trained Community Health Advocates (CHAs), who address misconceptions about breast cancer screenings and encourage women to schedule regular mammograms, and Patient Navigators (PNs) who help guide women with cancer through treatment and recovery.
PNs, all minority cancer survivors themselves, accompany patients at each step, sitting in waiting rooms, going into exam rooms if necessary, helping to write down questions, calling to remind patients of appointments, and making sure they are taking their medications.
Beverley Martin, a nine-year breast cancer survivor from Lithonia, decided to become a Patient Navigator at Grady so she could share her hard-earned knowledge and expertise. After a shadow showed up on a routine mammogram, she had a core biopsy, a lumpectomy, thirteen lymph nodes removed (three of which were infected), a mastectomy, eight chemo treatments, thirty-six radiation treatments—and two years after that, reconstructive surgery. “I’ve been through every step,” she says, “and I wanted to be able to help somebody else through this scary time.”
Martin, now fifty-five, had the counsel of a group of female cancer survivors from her church as well as an extremely supportive husband. (“My rock,” she calls him, “who went to every doctor’s appointment with me and kept anyone who was negative away.”)
Now, in the support role, Martin has found that it’s best to take small steps with her patients. “You can’t tell them too much at one time, it will overwhelm them. You ask, ‘What has the doctor said to you?’ You ask what questions they have. You say, ‘I will meet you there.’ ”
She has up to ten and eleven patients at a time, and calls them on weekends to check in, see how they are, and discuss what appointments are coming up. “I’ve built such a strong rapport with some of them that they will call even after their treatment is over, saying, ‘I still need to keep in contact with you.’ ”
The program is funded by the Avon Foundation, which has provided more than $9 million to WCI since 2000.
While the Patient Navigators “help so much with compliance,” says O’Regan, early detection is equally important. “Breast cancer, even triple-negative breast cancer, is curable if detected early. But patients in underserved communities don’t get as much screening. So they present later, with this very aggressive cancer, and that’s a problem.”
More research that includes minority patients, community outreach and education, equal access to care, and programs like the Navigators all increase the chances that African American women with breast cancer will have the same shot at survival as anyone else.