Health system experiences of breast cancer survivors in urban South Africa

BACKGROUND: Breast cancer is the most common cancer globally and among South African women. Women from socioeconomically disadvantaged South African communities more often present later and receive total mastectomy compared to those from more affluent communities who have more breast conserving surgery (which is less invasive but requires mandatory radiation treatment post-operatively). Standard chemotherapy and total mastectomy treatments are known to cause traumatizing side effects and emotional suffering among South African women; moreover, many women face limited communication with physicians and psychological support. OBJECTIVE: This article investigates the experiences of women seeking breast cancer treatment at the largest public hospital in South Africa. METHODS: We interviewed 50 Black women enrolled in the South African Breast Cancer Study to learn more about their health system experiences with detection, diagnosis, treatment, and follow-up care for breast cancer. Each interview was between 2–3 hours, addressing perceptions, experiences, and concerns associated with breast cancer and comorbidities such as HIV and hypertension. RESULTS: We found most women feared diagnosis, in part, because of the experience of chemotherapy and physical mutilation related to mastectomy. The importance of social support from family, religion, and clinical staff was fundamental for women coping with their condition and adhering to treatment and medication. CONCLUSIONS: These findings exemplify how interventions might promote early detection of breast cancer and better adherence to treatment. Addressing community perceptions of breast cancer, patient needs and desires for treatment, structural barriers to intensive therapies, and the burden of invasive treatments are imperative next steps for delivering better breast cancer care in Soweto and other resource-constrained settings.