Michele Mitchell spent the first months after her breast cancer diagnosis in an exhausting whirl of fear and depression.
But after a mastectomy, chemotherapy and radiation, Mitchell finally allowed herself to start a new chapter — finding much of her will and strength through post-treatment information and a sisterhood of fellow black breast cancer survivors as part of the University of Miami Miller School of Medicine’s community-based stress management intervention program called Project CARE.
Essentially, the program is about the journey after the journey.
“For a while, I kept asking, ‘Why me? Why me?’ ” Mitchell said from her Hialeah apartment. “I came to rely on the Project CARE. They told us so much of what we needed to know, about how the Tamoxifen [used to block estrogen] would make us feel. They told us about depression and how to get past it. It was like they were little angels sitting on our shoulders while we went through this.”
The team of researchers at UM’s Sylvester Comprehensive Cancer Center who launched Project CARE found that the program — including the stress reduction and the health and wellness information — improved the way underserved black breast cancer survivors adapted psychologically after treatment.
Those findings were recently published in the Journal of the National Cancer Institute Monographs. The five-year Project CARE study, which ended in 2013, began after Sylvester researchers noticed few black women had enrolled in their previous stress-management programs. The study was funded by a $4million grant from the National Institutes of Health. The Project CARE team plans to partner with community groups early next year to offer the program at locations across the country.
“We had meetings with people from the community … They told us that our researchers didn’t understand their needs and that our programs weren’t specific enough to their life experiences,” said Suzanne C. Lechner, UM research associate professor of psychiatry and behavioral sciences, and the lead author of the study. “They needed to feel engaged, and that the people running the groups were just like them and from the same neighborhood. And they didn’t want to come to UM; they wanted UM to come to them.”
From those meetings Project CARE (Cope, Adapt, Renew and Empower) was born, a culturally sensitive program for black women. Research shows black women are generally more likely to be diagnosed in a later stage of breast cancer and require more invasive treatments. Project CARE consists of two 10-session tracks providing stress management techniques or breast cancer wellness education and was offered in black communities throughout Miami-Dade County — but also drawing participants from as far as Palm Beach County.
“Treatment for breast cancer is usually a long process. It can be drawn out for many months, and a patient develops a strong bond with her treatment team,” Lechner said. “But when treatment ends, they lose that part of their support system. This has strong emotional implications.”
Researcher Nicole Ennis Whitehead said the program was tailored for the group. That meant making sure the facilitators were also black, holding the meetings in the community — sometimes churches —and incorporating spirituality.
“We were trying to create an environment that spoke to the groups,” said Whitehead, now an assistant professor in the department of clinical and health psychology at the University of Florida. “In cognitive behavioral therapy there are no references to God, but we realized without talking about a higher power, there might be a disconnect. So we would use the serenity prayer and talk openly about using religion to cope.”
The 115 survivors — ranging from a high school dropout to a physician — were all women who had completed breast cancer treatment within the previous 12 months, considered the “survivorship” phase. They met weekly in groups of six to eight women. At the start and finish of the program, each woman gave samples of saliva for researchers to measure levels of cortisol, the hormone released by the adrenal glands as a response to stress.
In the stress management track, the women were taught muscle relaxation techniques, visual imagery, deep breathing and meditation to reduce anxiety, not just for the aftermath of cancer but other stresses in their family life. In the wellness track, they were given tips on how to navigate the healthcare system as well information about nutrition and exercise. They also addressed fear, sexuality and hereditary issues.
“We really worked on teaching the women how to cope. Thoughts are connected to feelings and feelings are connected to behavior,” Whitehead said. “We helped them to deal with fear in a healthy way.”
Among the results: the retention rate was 95 percent and the women showed improvement on markers of wellness, reporting a better overall quality of life, less intrusive thoughts, less depressive symptoms and lower stress levels following the intervention program.
“Many women tell us there is a shift in how they view their lives after breast cancer, and they aren’t sure what to do next. Some, for example, want to make changes in their health behaviors, but they don’t know how to begin or where to go for help,” Lechner said. “Others find their friends and family don’t understand what they have been through, and they need to create a new support network with new friends.”
Mitchell, who has been cancer-free since 2012, said she felt lost after the treatment. She struggled with her identity and purpose. She found comfort in the stories of other black women who had battled breast cancer.
“When you are listening to others and their story sounds so much like your own, you realize that you are not alone,” said Mitchell, who learned about the program through a flier at Hollywood Memorial Regional Hospital in Hollywood.
Lorna Douglas-Fortin, 50, of Plantation, was diagnosed with breast cancer after she discovered a lump during the three-month follow-up of a breast enhancement procedure in late 2009. Within weeks, she had a lumpectomy along with chemotherapy and radiation.
“Project CARE teaches you how to live after cancer. They really work on your mental state, teach you to be mentally strong which you need to get through everything,” said Douglas-Fortin, a medical assistant in an orthopedic surgeon’s office. “I also learned a good deal about nutrition, the importance of exercise and switched to an organic diet.”
By the end of the program, Douglas-Fortinhad started counseling others battling the disease.
“As soon as I would hear about a friend getting the diagnosis, or even strangers, I started making calls, sharing what I had learned,” she said. “I know what they are going through, I know how scared they are and I know they need someone to talk to before and after the treatment.”
Tara Kitt-Laudat, 52, learned that she had breast cancer while healing from breast reduction surgery in January 2010. Months after her mastectomy, she joined a group of six women on Tuesdays at Antioch Missionary Baptist Church in Miami Gardens.
“I am an only child, so this group became my support system,” said Kitt-Laudat, who works as a pre-trial service officer 2 for Miami-Dade Corrections. “Those meetings were the one place I could talk openly about my medical issues. I walked away with a sense that I am not the only one affected by breast cancer.”
Project CARE is looking for black women in South Florida to participate in focus groups. Participants must be within three years of their breast cancer diagnosis. For more information, call UM’s Debra Annane at 305-243-2440.