It was January 2009, and Esther Coleman, an African-American attorney in the District of Columbia, was hosting friends for the first inauguration of President Barack Obama. Normally, Coleman would have been more excited. But she had just learned she had breast cancer. “I had to tamp my feelings down and not be a downer for everybody,” she says.
At 31, Coleman was young to have breast cancer, but that’s in line with national trends. When comparing women under 45, African-Americans are more likely to get breast cancer than whites, according to data from the Surveillance, Epidemiology and End Results program, cited by the American Cancer Association.
Latest Developments
This month marked the release of sobering new research on breast cancer and changes in mammogram guidelines.
The new study, published Oct. 13 in Cancer Epidemiology, Biomarkers & Prevention, found of more than 100,000 women diagnosed with breast cancer in 2010 and 2011, African-American and Hispanic women were more likely to be diagnosed at later stages. African-American women had a much higher risk of the disease being discovered at the most advanced, deadly stage. And African-American and Hispanic patients were up to 40 percent more likely to receive treatment not in line with breast cancer guidelines.
Advocates are more troubled than surprised by these findings. “Sadly, we’re well aware of these disparities,” says Brian Smedley, executive director of the National Collaborative for Health Equity. “Too often, the reaction is, ‘Here we go again — another study showing persistent disparities.'”
Missing Out
This week, the American Cancer Society revised its mammogram guidelines. Before, women were advised to start yearly mammograms at age 40. Now, the recommended starting age for women with average breast cancer risk is 45. Still, that’s younger than the recommendations of the influential U.S. Preventive Services Task Force, whose guidelines suggest mammograms start at 50, with follow-up scans every other year.
Previous studies have shown survival gaps, with African-American women significantly more likely to die from breast cancer. “The difference in mortality rates represents who gets access to quality care,” says Linda Goler Blount, president and CEO of the Black Women’s Health Imperative. “They also represent when women of color, particularly African-Americans and Latinas, get their breast cancer diagnosed. [That] tends to be a much later stage, when the prognosis isn’t as good.”
Blount’s group is concerned about the task force’s recommendations. “Since a woman of color is likely to get her breast cancer diagnosed at a younger age, [with] the guidelines up to 50, those in their 20s and 30s will miss out.”
To detect breast cancer early, doctors must think beyond age alone, Blount says. “Providers need to talk to black women and women with dense breast tissue in their 30s, especially if there’s any family history at all on either side — mom or dad,” she says. “Providers should get a baseline mammogram done early as possible and then follow women with regular visits and mammograms.”
Best-Case Scenario
In some ways, Coleman was fortunate. She’d seen the same primary care physician for 10 years and received regular breast exams as well as a mammogram in her early 20s, when her doctor found cause for concern during an exam. That time was a false alarm.
In the latest screening, the doctor again felt something and again sent Coleman for a mammogram. Because Coleman has dense breasts, her doctor also ordered an ultrasound. Breast density — which can make it more difficult to interpret a mammogram — is associated with higher cancer risk. A study presented at the American Association for Cancer Research meeting in April found black women had higher breast density than white women.
Coleman underwent lumpectomy surgery, with some nudging from a proactive surgeon. Although she saw the surgeon immediately after her diagnosis, she put off the return visit. The surgeon called Coleman, who admitted being afraid. “‘Well, I understand you’re scared, but you waiting isn’t going to improve anything,'” she recalls the surgeon saying. ” ‘You need to schedule a surgery.’ So I did that.”
Surgery went smoothly, followed by six weeks of daily radiation treatments. Coleman took Tamoxifen for five years, completed last year.
While Coleman was fortunate to have early-stage disease, the diagnosis took an emotional toll. “Even with me not having, quote-unquote, a very traumatic cancer experience — I didn’t get a double mastectomy and reconstruction, or chemotherapy — it’s just very hard,” she says. Feeling a need to connect with others, she turned to the Black Women’s Health Imperative, which she knew of from attending outreach events.
Through a combination of preventive care, mammogram and ultrasound testing, early detection, surgery and proper follow-up treatment, Coleman is doing well. But some women don’t have access to that kind of care.
Suboptimal Care
In the new study, researchers at the Fred Hutchinson Cancer Research Center combed through data from 18 cancer registries. “We compared stage of cancer and receipt of treatment among women recently diagnosed with breast cancer,” lead study author Lu Chen wrote in an email. “We saw a consistent pattern of late diagnosis and not receiving recommended treatment for African American women across all breast cancer subtypes.”
To determine if women received appropriate care, researchers looked at two types of primary treatment for early-stage breast cancer. Of those, breast-conserving therapy that was done without follow-up radiation was the most frequent example of care that failed to meet guidelines.
Findings like these show why it’s so important to choose the right hospital and the right doctor to get the best care possible. The American Cancer Society suggests steps to follow and questions to ask throughout the process.
Awareness and Action
Karen Jackson is the founder and CEO of Sisters Network, a national African-American breast cancer survivorship organization. Her group provides resources, including financial assistance, for women seeking high-quality cancer care.
“Breast cancer is not in anyone’s budget,” Jackson says. “It doesn’t matter if you have insurance or if you have a job. Most people are living paycheck to paycheck.” Sisters Network also offers help from navigators — members who accompany women to appointments and act as advocates during this vulnerable time.
Jackson, a two-time breast cancer survivor, says she’s personally received good cancer care. However, she says, during the first bout, it took time to persuade her doctor to order ultrasound testing when she realized something felt wrong, even though her mammogram results were negative.
Working with women throughout the country has opened her eyes. “That’s when I saw the difference — the disparities that existed in treatment, how long you have to wait from the time you have your mammogram to the time you see a physician, an oncologist or a surgeon,” Jackson says. “It’s criminal how long a woman has to wait for service when she doesn’t have insurance.”
Women may experience gaps of several months between diagnosis and treatment, Jackson says. “So you have to be aware that that is not the norm, and make the person know that you know that this is not the norm. That this is not acceptable.” Do not hesitate to seek a second opinion, she emphasizes.
Lowering Risk
The Affordable Care Act has increased access to health insurance, which should help address disparities. Although it’s too soon to know the precise impact on breast cancer diagnosis and survival, experts say better access to treatment is a big step in the right direction.
Breast cancer research must widen its scope, Smedley and Blount agree. It’s time to look for causes and make changes “upstream,” Smedley says, to reduce social, economic and environmental disparities. Blount calls for more-inclusive research, which could lead to more-relevant findings and treatment recommendations for African-American women, Latinas and others.
Besides seeking good preventive care, women can help themselves by eating healthy, exercising, maintaining a healthy weight and not smoking. “Women can do these simple things to actually reduce their risk for breast cancer,” Blount says. “But if they’re going to get [cancer], then get it detected early. At the end of the day, that will save a woman’s life.”
More from U.S. News
What Not to Say to a Breast Cancer Patient
A Tour of Mammographic Screenings During Your Life
Black Women and Breast Cancer: Disparities Continue originally appeared on usnews.com
