In Sudan, efforts to erase breast cancer stigma

PURDUE (US) — A new program that uses local volunteers helps overcome the shame and social barriers faced by women in sub-Saharan Africa that prevent early screening for breast cancer.

In rural Sudan, lack of resources, social stigmatization, and religious beliefs can keep women from seeking help for breast cancer, the most commonly diagnosed cancer and the second leading cause of death in women.

“Patients in Africa often present with late-stage breast cancer that has spread to other organs and is very difficult to treat,” says Sulma Mohammed, an associate professor of cancer biology at Purdue University.


“There is a strong social stigma associated with the disease and a great lack of awareness of the importance of early detection. The same approaches that are successful in the United States don’t work in these rural areas. We need an approach that could overcome the barriers preventing these women from seeking help because thousands of women are dying needlessly.”

Mohammed, who is from Sudan, says the social barriers to screening programs and early detection are especially difficult to overcome. “The stigma surrounding cancer is so great that people hide the disease from their family and friends and will not seek treatment until they are in severe pain,” she says.

“Women in rural areas where men are allowed more than one wife have a great fear of being disfigured by surgery and losing a husband and support for their children.”

In addition, some African communities are Muslim and women cannot expose their breasts to a male doctor or nurse as part of a screening program.

“We used young female volunteers from the community so that the screenings came from a familiar and trusted person who shares the patient’s social fabric and belief system,” Mohammed says. “If you are approached by someone you know and trust, you tend to be more relaxed and more forthcoming with any symptoms you may have.”

Researchers first met with village leaders to discuss the effects of cancer on the community and to get approval of the screening program. The leaders then chose candidates for the training, Mohammed says.

Health-care workers provided a five-day intensive training course to female volunteers from selected villages in cancer risk factors, the importance of early detection, and how to examine breasts for abnormalities. The volunteers then went door to door in their village to screen women 18 and older. The volunteers referred women with suspected breast cancer to the district hospital for diagnosis. The program also included a cancer awareness campaign for both men and women.

Between Jan. 1, 2010, and Oct. 15, 2012, in Keremet County 10,309 women were screened, which is roughly 70 percent of the female population. Breast abnormalities were found in 138 women, who were then referred to the district hospital. Seventeen of the women referred were diagnosed with various stages of breast cancer. After treatment, 12 were reported to be disease-free and had good prognosis as of the most recent follow-up.

In contrast, in the socially and economically similar villages of Abugota County, where no screenings took place, four women reported to a health center and three were diagnosed with advanced breast cancer and had poor prognosis.

“Despite the small size of the screened population, 12 women were diagnosed with breast cancer and treated that otherwise may not have been seen until their cancer progressed into an advanced stage,” Mohammed says. “We hope that one day such screening programs will be common throughout rural Africa.”

In addition to the social barriers, sub-Saharan African countries like Sudan do not have the infrastructure, resources, equipment, or trained personnel to follow successful initiatives used in the United States and other high-income countries.

Mammography-based screening, which is standard in many countries, is not a realistic screening model for sub-Saharan Africa, Mohammed says.

“For the time being, let’s forget looking deeper through mammography and start by catching the stuff we can see and feel,” she says. “Awareness campaigns and self-examination are cheap, easy to implement, and could have a dramatic effect on the survival chances of these women.”

Even if it were feasible, mammography-based screening methods may not have as great an impact in Africa. Mammography-based screening has not been shown to be beneficial to women younger than 40, and breast cancer in African women occurs most often in women 34 to 45 years old.

The Sudan National Cancer Institute-funded study is ongoing, and the team plans to follow the women who took part in the study for at least five years. The group also is working to spread the program to another state in Sudan.

Researchers from the University of Gezira in Sudan participated in the study.

Source: Purdue University