A year-round approach to breast cancer awareness, detection and recovery

October is the month where everything that could possibly turn pink, turns pink. For 31 days, breast cancer awareness manifests in the most creative forms — from pink soup cans to pink-laced football cleats.

But when November begins, pink loses its punch. For the women and men living with the disease, every month is breast cancer awareness month. For these survivors, the festive pink ribbons barely brighten the harsh realities of hospital hallways and long white coats. Now they face the anxiety of waiting for results, the anticipation of treatment and the weight of assuring family and friends when, really, they just need assurance themselves.

When a woman, or even rarely a man, is diagnosed with breast cancer, she doesn’t think pink.

When she hears her doctor explain that the lump in her breast is growing, outline the schedule of visits for the next cycle of chemotherapy or walk her through the process of a mastectomy, she hears her children asking who will take them to school; she imagines the look of disappointment on her boss’ face as she takes yet another sick day; she shares her partner’s fear, frustration and anger as the future she had imagined fades into something unimaginably abstract, terrifyingly unknown.

The only thing she is aware of is that her diagnosis has sent the world crashing down around her.Amidst the post-October pink fatigue, these patients are left to pick up the pieces.

Who works beyond the rush of pink October? Who is there to help the newly diagnosed women cope and recover year-round? At Clemson, one group of professors and researchers is dedicated to helping these women put their worlds back together. They’re focused on how to treat the disease, and — just as importantly — on how to treat the woman who is dealing with it. Some cover the science, some cover the psychology, but all are coming together to form a multi-faceted method for preventing, treating, surviving and defeating breast cancer.

Working Inside Out

Recovery starts with the patient’s mental and physical well being and wraps in her closest friends and family before tying in society at large, according to nursing professor Stephanie Davis.

“You can’t look at just the breast cancer. You have to look at the whole woman as a holistic being. Every aspect of her life is interwoven into her diagnosis,” she said.

Davis and her co-researcher, Deborah Willoughby, focus their efforts on improving quality of life for breast cancer patients by pulling apart the different threads of this complex disease: body image, social support, coping and sexuality.

“In our society, breasts are emblems of the female persona. When a woman is forced to lose one or both breasts or suffer disfigurement from treatment, she may feel less appealing to her partner and others,” Davis said. “Women who lack social support networks or have taxed coping skills tend towards negative long-term effects — it’s a vicious cycle which ultimately hurts the patient’s ability to thrive.”

Professor Davis is not alone in her concerns. Parks, recreation and tourism management professor Marieke Van Puymbroeck combines aspects of Davis’ social frame for viewing breast cancer with her own focus on physical intervention. This approach encourages patients to embrace their changed bodies, adapt to new lifestyles and overcome physical boundaries set by aggressive treatment.

“As a recreational therapist and rehabilitation scientist, I’m interested in using leisure and recreation to restore function.”— Marieke Van Puymbroeck

“After breast cancer surgery, women tend to hunch over and are more self-conscious,” Van Puymbroeck explained. “As a recreational therapist and rehabilitation scientist, I’m interested in using leisure and recreation to restore function.”

Van Puymbroeck’s background in restorative and therapeutic activities inspired her to lead a groundbreaking research study examining yoga’s ability to open the chest and reduce scar tissue in post-operational breast cancer patients. And the results of her research yielded much more than data.

“The women involved loved it. They would say ‘one boob, no boobs — it doesn’t matter,’” she recalled. “They felt comfortable no matter what they looked like in their sisterhood of survivors.”

Both Davis and Van Puymbroeck agree that intervention plays an integral role in breast cancer recovery. “If we can encourage good coping skills and offer much-needed support, women may feel less alone and more able to manage their disease.” Davis said.

  • Fighting Disparities

Health sciences professor Rachel Mayo hopes to screen for and detect the disease early, when there are more treatment options. Her work centers on bringing information and health care access to all women, regardless of the circumstances that separate them.

Witness Program_058Mayo knows better than anyone that cancer doesn’t discriminate according to race, education level or socioeconomic status. She was diagnosed with breast cancer last summer and, fortunately, her cancer was caught early.

“At the earliest stages, breast cancer has a 99 percent survival rate,” Mayo said. “If a woman who specializes in breast cancer research can get it, imagine how important it is to help people who don’t know anything about the disease. Breast cancer does not see the lines in society the way we do.”

This personal connection has renewed Mayo’s desire to understand and eliminate disparities in breast cancer rates. Disparities result wherever there is inequity in society — such as in education, income or access.

“White women are more likely to get breast cancer, but African-American women are twice as likely to die from it,” Mayo said. “In South Carolina, 23 percent of women have no health insurance and 25 percent have no medical provider.”

As a result, women living in rural communities are often less educated about breast cancer or unaware of the importance of screening.

Talley, Johnson, Mayo and Bullock

Talley, Johnson, Mayo and Bullock

In order to eliminate this serious gap in health care access and education, Mayo brought the Witness Project to South Carolina. The project connects science with social networks, often partnering with churches and community groups, where women can share their experiences with breast cancer and explain the importance of screening.

Jacqueline Talley of Spartanburg is the statewide coordinator for the Witness Project, which has trained more than 400 witnesses. Those witnesses have made more than 900 presentations over the last seven years, reaching more than 4,000 women across the state.

“All women are at risk, and some American health care disparities are akin to developing countries,” Mayo said. “We need to talk about breast cancer whether or not it’s October.”

Leaving a Legacy

Pattilee Tate

Pattilee Tate

Nursing professor Julia Eggert lets her lab work do the talking. Her research delves into the biological aspects of breast cancer more than the social, political or perceptual dimensions of the disease.

“We’re down to the molecular level,” said Patilee Tate, the health care genetics lab technician who works closely with Eggert in her undergraduate research classes. “We are leaving a foundation that other work can build on.”

Eggert’s 22 years of clinical experience include managing a local site of an international breast cancer prevention trial that provided data for a major medical breakthrough: the impact of Tamoxifen to prevent breast cancer in women without a diagnosis of this disease. Tamoxifen solidifies the relationship between genetics and breast cancer since research has shown that Tamoxifen can decrease the incidence of breast cancer in women with a BRCA2 mutation.

“Breast cancer patients are special,” Eggert said. “Women with a family history who took Tamoxifen during the first prevention research study came to me and would say, ‘I take vitamins for myself, but I take the white pill for my granddaughter to prevent breast cancer in her lifetime.’”

But her patients aren’t the only ones who are special. When she came to Clemson, Eggert brought more than her experience — she brought her passion for action.

Eggert conducted a trial that examined the effects of berry products on neurological function during cancer treatment and wrote a book oncology nurses can use to improve quality of life in cancer patients. Recently she started a weekly cancer clinic at Bon Secours St. Francis Health System in Greenville. Her involvement in many different areas of breast cancer treatment and prevention has left a tangible mark on the way we approach the disease. But perhaps the most lasting of her accomplishments was her co-development of Clemson’s Healthcare Genetics doctoral program in the School of Nursing — one of the first programs in the nation to combine health care and genetics.

“Now, there are so many more people looking at the importance of including genetics into nursing curriculum,” Eggert said. “Researchers have been able to target genes for both diagnosis and treatment. We’re finding more ways to handle inherited mutations that contribute to a breast cancer diagnosis.”

Eggert recently received a $200,000 grant, in collaboration with Greenwood Genetic Center, to work with women who have been newly diagnosed with cancer to determine if they have a certain DNA mutation.

“In the study we are interested in all women, but particularly black women, in whom breast cancer can be more aggressive,” Eggert said. “We have a responsibility to understand what’s happening to our patients. It’s our job to give women control of their lives again when it seems like a disease has taken it from them.”

  • Shaping the Future

Davis, Mayo, Van Puymbroeck and Eggert have all contributed invaluable research by connecting the social, physical and scientific aspects of a complicated disease. But their dual roles as researchers and professors are the final link that will make the possibility of a cure a reality.

“As a professor, I look at my students as the generation that will answer questions like ‘How do we provide health care for all?’” Mayo said.
Individual research in the lab shapes the classroom experience for students — students who will soon become the next generation of scientists, therapists, researchers, educators and health care providers.

Through Clemson’s Creative Inquiry undergraduate research program, Eggert’s students get this hands-on experience growing and culturing breast cancer cells in the health care genetics lab. “Students gain experience in leading and mentoring, not just data collection,” Eggert said.

Davis shares Eggert’s appreciation for undergraduate research projects, especially as the two collaborate in the lab. Their same passion for holistic care carries over to their interdisciplinary work.

“We do research not just for the Clemson Family, but for the global community,” Davis said. “Our students should leave Clemson with compassion for all women — we want them to know the answer is more than a prescription.”

Although the research may start in South Carolina, Clemson faculty and students aim to end a disease that impacts women everywhere. That means working together — not just in October — to beat this disease.

Kara Robertson ’16 and Leah VanSyckel ’16 are interns in Clemson’s Office of Creative Services.

Listen to Rachel Mayo and Jacqueline Talley discuss the Witness Project and breast cancer detection.

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