Even though breast cancer is the most common form of the disease to afflict American women, when diagnoses were handed down to Grace Yoo’s friends, it was something she was not prepared for.

“I just never thought that Asian American women were vulnerable to breast cancer. It’s not something you’re warned about,” said Yoo, an associate professor of Asian American studies at SF State. “Breast cancer has always been thought of as a white woman’s disease.”

Cancer research has focused predominately on white women because this group has the highest incidence of breast cancer, but also because white women have been the most likely to participate in research studies, said Yoo, who has a Ph.D in medical sociology.

It does not help that popular media have made stars of cancer survivors such as Melissa Etheridge or Suzanne Somers without featuring models from non-white ethnic backgrounds.

Black women, in particular, have borne the brunt of this inadequacy. According to the American Cancer Society, although black women have a lower incidence of the disease, their breast cancers are more likely to be fatal.

It was this kind of disparity that prompted Yoo to put together a five-year study with colleagues from several universities geared specifically toward minority populations. She teamed up with Ellen Levine, a senior scientist at SF State’s Biobehavioral Research Center, Caryn Aviv from the University of Denver and two medical doctors from UC San Francisco’s Comprehensive Cancer Center.

Together, they studied breast cancer survivors from four ethnic groups: Asian, Hispanic, white and black. Interviews revealed differences among these groups in what they viewed as the factors leading to their cancer diagnoses.

The most commonly expressed risk factors were issues of personal choice and lifestyle such as diet, use of alcohol or stress. While non-white women were the most likely to list the factors above, white women were more likely to note the use of hormones, such as birth control pills, as a risk.

In 2002, Levine and Elisabeth Targ of the California Pacific Medical Center published data that supported a link between spirituality and improved psychological and physical well-being in women diagnosed with breast cancer.

Yoo and Levine’s current research found that black and Hispanic women were more likely than white women to engage in spiritual activities. The 81 percent who used prayer specifically were more likely to associate some positive personal growth or outcome from their experience with the illness. There is no evidence, however, that prayer affects disease or health.

Although some of the data is still being analyzed, results of the study are already being put to use.

Levine currently designs and implements “wellness interventions” for black survivors of breast cancer that are a mixture of education and support.

Past retreats and workshops have dealt with participants’ fears of cancer recurrence, spirituality, sexuality and making lifestyle changes such as cooking more healthy meals while preserving “soul food” traditions.

Jacqueline Bishop, a research assistant for the project who recently completed her master’s degree in psychology at SF State, emphasized the importance of culturally-based programs. In black culture, she said, discussing health problems can be sensitive or even taboo.

“You don’t stand up and say ‘I’ve got breast cancer.’ You don’t share that information outside your family,” she said.

Bishop also noted that distrust of medical professionals can make blacks a more elusive group to involve in research studies.

Bishop said her direct involvement in meeting and interviewing breast cancer survivors has given her insight.

“You hear about what women go through with cancer, but to actually see it—that’s a completely different experience,” she said.

Witnessing the lives and recording the thoughts of research subjects highlighted disparities in treatment and inequality of medical care among black women with breast cancer, she said.
“Billions of dollars are being spent on an unjust war, but some people are in a position where they need to decide whether to buy their medication or buy food. That’s a horrible decision to have to make,” Bishop said. “It has really confirmed for me that this is the area of research I want to pursue.”

Bishop hopes to tailor research around the black population, which has experienced a high incidence not only of breast cancer, but also diabetes, high blood pressure, obesity and other diseases.

For Ivy Wong, a health education major at SF State, participating in the study as a research assistant was an opportunity to explore what aspects of public health service suited her.

In addition to finding the work fulfilling, she found herself being positively affected by listening to the survivors during the course of her interviews.

“Their stories are very empowering. It really puts your own life into perspective,” she said.

Wong said that seeing the emotional strength of the survivors made her a more optimistic person, and that she would want to emulate that strength if she experienced a similar crisis.

“No one is born courageous,” she said. “You have to learn how.”