One woman thought breast cancer could be prevented by drinking camel milk. Another believed the sun helped protect against the disease.
A group of Somali Muslim women living in the Seattle area participated in a focus group conducted by researchers in Fred Hutchinson Cancer Research Center's Public Health Sciences Division. The project, whose findings were published recently in Health Care for Women International, aimed to gauge the women's knowledge and perceptions of breast cancer.
One of the most telling things the project revealed was a deep reluctance among the 14 women who participated to even talk about breast cancer, a disease they knew little about.
"They just clammed up," said researcher Dr. Beti Thompson, a member of the Hutch's Public Health Sciences Division and one of the paper's authors. "They just looked at each other.
"Breast cancer is something that is just not discussed in the Middle East, particularly among Arabian families. The depth of the silence surprised me."
The findings highlight the need for breast cancer education targeted at immigrant women, who are especially likely to have late-stage disease by the time it is detected due to a lack of screening in their home countries.
That need is particularly acute in light of a spike in breast cancer rates worldwide over the past five years. According to the International Agency for Research on Cancer (IARC), breast cancer incidence globally increased by 20 percent between 2008 and 2012, to 6.3 million cases. Breast cancer is the most common cause of cancer death among women worldwide, killing 522,000 women in 2012 alone.
The group of Somali women, all recent immigrants, said they did not discuss breast cancer with anyone, even family members. Their comments underscored the barriers they faced in accessing breast cancer screening and care ― only one of the women, who ranged in age from 30s to 60s, had heard of screening before immigrating to the U.S. and most didn't understand the purpose of mammograms.
In most cases, the women's primary care physicians had not advised them to be screened, the researchers found. A possible explanation for that, Thompson said, is that primary physicians who see immigrant populations often have heavy caseloads involving high levels of acute illnesses.
"I can see that preventive care might be a second-tier recommendation," she said. "But it was surprising to us."
Thompson said researchers need to work with physicians and urge them to emphasize breast cancer screening with their patients. "It's really time to go out and talk with physicians to try to get them to take care of the whole person instead of seeing them as a diabetic, a heart patient or something else," she said.
Other barriers identified during the focus group included language challenges, a belief that mammograms are painful, preference for a female or Muslim doctor and little knowledge of where to access services.
Dr. Ben Anderson, director of the Hutch-based Breast Health Global Initiative and a breast surgeon at UW Medical Center, said reducing breast cancer rates requires a multipronged approach ranging from simple measures such as offering brochures in various languages to working with international health organizations that have influence in other countries.
The focus group findings highlight a fundamental need to ensure accurate information is made available to women, Anderson said.
"We need to make sure that knowledge isn't just being bounced around among academics but is out there in the healthcare community, particularly at the primary healthcare level," he said. "Many of these things can be addressed through education."
But Anderson said efforts to reach immigrant women must take into account different cultural frameworks that influence attitudes about disease and treatment. Women from some cultures take a fatalistic view of cancer, Anderson said, believing that they have no ability to influence the outcome. Some women come from cultures that fear treatment, he said, while others are more likely to want cancerous tissue removed immediately.
"It's just a different way of feeling about one's body," he said. "We want to know not just about awareness, but also their attitude about disease and how they would feel about having something taken out if it was abnormal."
Anderson mentioned a 2011 study done by Harvard Medical School researchers on barriers to breast cancer screening among women living in Gaza. The study, published in The Breast Journal, found that while more than 90 percent of the women were willing to get a diagnostic mammogram if something appeared to be amiss, no more than half would get a mammogram if their breasts seemed normal.
By contrast, a 2006 study in the International Journal of Cancer involving women in the Philippines capital of Manila found that just 42 percent who had lumps detected through clinical exams refused further testing, even with home visits encouraging them to follow up.
The variation in responses, Anderson said, points to the value of incorporating sociology and anthropology in medical research.
"That's why [Thompson's] work is so valuable. She's looking at questions from the perspective of the woman or patient: 'What are your beliefs? What are your attitudes?'" he said.
"I've come to understand from my work that this research is absolutely critical. Just because you build it does not mean they will come."
Reach writer Deborah Bach at email@example.com.