This article first appeared in the St. Louis Beacon, Oct. 10, 2011 - Sandy Johnson was devastated when she learned that a lump discovered on her right breast was cancerous. Fourteen years later, however, she's using her experience to encourage other women not to think of the disease as a death sentence.
"It can be beaten if you're ready to fight," said Johnson, who credits surgery, chemotherapy, radiation and faith for helping her cope with a disease that has, in fact, been a death sentence for many African-American women. They tend to die from it at a much higher rate than white women.
This disparity is about to get additional attention. Through a grant from the Komen Foundation, a research team led by Sarah Gehlert of Washington University's Brown School of Social Work, will take a closer look at the experiences of women who were diagnosed with cancer between 2000 and 2008 in a half dozen high cancer-mortality ZIP codes in north St. Louis and in Jennings.
Before joining the Brown School, Gehlert directed a National Cancer Institute cross-disciplinary research project while on the faculty at the University of Chicago. It looked at behavioral, environmental and economic factors influencing health disparities. The focus was on 230 black women on Chicago's South Side who had been newly diagnosed with breast cancer.
In St. Louis, Gehlert said researchers hope to interview 120 women from the targeted ZIP codes. Based on her experience in Chicago, Gehlert believes it won't be a problem getting the women to talk to well-trained African-American interviewers.
"We found that it was really cathartic (for the women) to be able to talk with somebody and not have to worry about personal impression the way they would have with their families and friends," Gehlert said. "The women were incredibly open and told us about their experiences."
The research team will soon open an office in the 3300 block of North Union in a former dental office, just south of the Schnucks north city store at Union and Natural Bridge. The group will distribute material about the study and expect to engage residents and build awareness through town halls and other activities over the next two years.
The team hopes to uncover gaps in services as well as any barriers the women might have faced in getting or completing treatment. Gehlert hopes the study will result in improved medical practices, better health outcomes, more trust between patients and providers and a sense of community empowerment.
Her partners in the research project include People's Health Clinic, Barnes-Jewish Hospital, Christian Hospital in North County, along with a ministerial group and a women's wellness group.
Racial Gap Persists
"African-American women are 37 percent more likely to die from breast cancer than white women even though white women are more likely to get it," Gehlert said. "We know we haven't been very effective in changing that."
According to the National Cancer Institute, the incidence of breast cancer for white women is 127.3 for every 100,000 women while the incidence for black women is 119.9. Yet the mortality rate for breast cancer for white women is 23.4 for every 100,000 women; for black women it is 32.4 for every 100,000 women.
Gehlert noted that the racial gap has persisted even as the number of black women getting mammograms approaches the rate of white women.
One difference, however, is that the cancer usually has reached an advanced stage by the time many black women get mammograms. Late diagnosis explains part of the problem, she said. Also, "women of West African ancestry tend to have a faster growing kind of breast cancer," Gehlert said.
Another variable that turned up in the University of Chicago research was the quality of the mammograms given to the women.
"That's another piece of the puzzle. One thing we're looking at in my project (in St. Louis) is how much we contribute to the differential mortality by the way we provide service to women," Gehlert said.
She also notes research showing that black women were less likely to finish treatment once they are diagnosed. She hopes that the research will show whether having to visit different places to receive services has discouraged some women from finishing treatment.
"A woman goes to People's (clinic) to get a mammogram. She is later told she has breast cancer, and she's devastated. People's doesn't (have surgical services) since it's a clinic. The majority of the women are referred to Christian Hospital and BJH. After surgery, they are sent to another place inside Christian or BJH to see an oncologist. Then they might have to go somewhere else to get their chemotherapy, and they probably will be referred maybe back to People's to be followed."
The woman may be "pretty much scared to death and may not have anybody with her," Gehlert continued. "We will see how well we do in serving this woman. How good are we in telling someone what they are to do next, in explaining it so that they understand. We don't know how well we train people who make those referrals."
Link Between Stress And Breast Cancer
Another issue is stress. Johnson had a mastectomy of her right breast, so she can relate.
"It was devastating, but I found out that I could make it through chemotherapy and radiation after the surgery. My spiritual life played a great part in getting me ready to go through what I had to go through, and everything turned out right."
Yet, she says that in addition to getting yearly mammograms and doing exams at least once monthly, "the most important thing a woman can do is keep yourself as stress-free as possible. Stress plays a great part in any illness. It can eat you up."
Gehlert agrees that stress can be a big factor, saying several studies "have found a statistical link between stressors and breast cancer. Our previous study in Chicago found empirical links for how the social environment and its stressors gets under the skin to change hormone expression associated with triple negative breast cancer." Triple negative breast cancer is a form of cancer that is difficult to treat and more likely to recur and metastasize than certain other forms, like the breast cancer found in women of West-African descent.
Fourteen years after her life-changing experience, Johnson, who once lived in north St. Louis and is now a homemaker in Florissant, offers a guarded view when discussing her condition.
"I'm one of those who never say I am cancer-free," she says. "My cancer is in remission. And I pray to God that it stays that way."
Funding for the Beacon's health reporting is provided in part by the Missouri Foundation for Health, a philanthropic organization that aims to improve the health of the people in the communities it serves.
