Posted March 28, 2008

"Taking Charge" of breast cancer means different things to different women

Temple Sociologist sheds light on the breadth of women’s experiences of a devastating disease.

Soon after receiving her diagnosis, Temple Sociology Professor Julia Ericksen realized that breast cancer was not like other diseases — or even other cancers, for that matter. “For one thing, most women survive it; and for another, it involves women’s breasts,” she said. “As a result, it is a very public disease.”

With a sociologist’s eye, she set out to explore several questions: How do women respond to a diagnosis of breast cancer? What choices do they make and why? How do they cope?

And because breasts are one of the most important Western symbols of femininity and breast cancer receives more attention in the media than other forms of cancer, Ericksen also wanted to know how the cultural messages women receive about breast cancer inform their journeys.

According to Ericksen, reading memoirs or biographies of women with breast cancer reveals only a narrow range of feelings and responses, because the women who are in a position to write these or be written about are usually from similar segments of society with access to similar resources.

Her resulting work, Taking Charge of Breast Cancer, draws from interviews in which 96 women from a range of racial, ethnic, religious and socio-economic backgrounds, aged 26 to 72, describe their journeys from diagnosis through treatment and recovery. Using a narrative approach, Ericksen sets into relief the diversity of approaches to dealing with the disease.

For her interviews, Ericksen deliberately sought out particular groups of women, such as African American women, lesbians and activists. While this tactic had the effect of making her sample less representative than a probability sample of women diagnosed with breast cancer, it also allowed her to talk with a more diverse group of women.

Through her research, Ericksen uncovered four general categories of response. The categories helped her understand variations in women’s interpretation of breast cancer and in the coping strategies they adopt, said Ericksen.

She refers to one category of respondents as “biomedical experts” — they’re the women who learn every aspect of the disease, consult with numerous doctors, seek out the latest treatments and direct their own care.

Due in part to positive changes made by the Women’s Health Movement since the 1970s, says Ericksen, there is enormous pressure from our culture today for women to take charge of their disease.

Donna, a 48-year-old lawyer and married mother, described for Ericksen a decision-making process that is typical of biomedical experts: “What I usually do is seek a lot of people’s opinions first, and then I get all those different opinions, and then I decide for myself.”

According to Ericksen, we hear accounts most often from these “biomedical experts,” as well as “alternative medicine experts” who by contrast do not put their faith in traditional medicine, because they are most often driven to tell their stories.

But in keeping with the author’s goal of letting patients’ voices be heard, Taking Charge of Breast Cancer showcases stories from members of other groups of responders as well — traditional responders and those who turn to religion or activism for strength.

The majority of the religious responders, defined as those who relied on faith as a basis for recovery, were African American.

Like other religious responders, Shantal, a married 51-year-old African American woman and longtime city employee, believed that God played a role in ensuring her early diagnosis. Normally reserved, Shantal insisted on a biopsy when her radiologist told her that calcifications were nothing to worry about.

“Had I not deliberately over-represented African American women in my sample, I might have missed this group entirely,” explained Ericksen.

“What I found overall is that you learn to cope, in whatever way works for you, because you have to. Regardless of your income or your support network, you cope,” she said.

“Each response is valid and successful in helping one make sense of her illness,” said Ericksen. “A woman doesn’t have to feel guilty about being a traditional responder. Perhaps she has small children and doesn’t have time to devote to getting up to speed on every little detail of her care. That’s okay.

“Whether you choose total reconstruction of both breasts, to wear a single prosthesis after a mastectomy or nothing at all, that’s okay, too,” she added. “And whether you keep 18 different wigs in your closet to wear during chemo or you shave your head, it’s all okay.”