Influence of Personal Exposure to the Cancer of a Loved One on the Breast Cancer Prevention Decisions of High Risk Women

Purpose: To explore the impact of close personal exposure to cancer in a family member or friend in the prevention decisions of women at elevated risk of breast cancer. Methods: 50 semi-structured interviews with women at elevated risk of breast cancer, focusing on perceptions of risk; risk information; consideration of prevention options; decision-making processes and networks, and psychosocial well-being. Transcribed data are analyzed with NVivo 10, using grounded theory methods. Results: Prevention decision making by women who have had close contact with the cancer diagnosis and treatment of a loved one (most often a mother or grandmother, but sometimes a sister, cousin, or close friend) is importantly influenced by these experiences. The process of deciding whether and when to undertake prophylactic mastectomy or oophorectomy, chemoprevention, enhanced surveillance, and/or genetic testing is substantially different in women who have and have not had close personal experience with the cancer of a loved one. Women who have experienced the deaths of one or more loved ones express strong motivation and willingness to undertake definitive interventions; most often this means prophylactic surgery, but this can also include chemoprevention. These women often feel that they are likely to be diagnosed with breast cancer eventually, and seek decisive methods to avoid what they perceive as a life-threatening diagnosis. Women whose loved ones have survived and thrived after a cancer diagnosis are more oriented toward careful surveillance through screening tests and physician checks. These women usually see breast cancer as a challenge they may have to deal with in the future, and they are motivated to set the stage for treatment success by establishing ongoing relationships with highly competent healthcare providers, and by being diagnosed as early as possible. Conclusions: Cancer care has strong effects beyond the cancer patient herself, affecting the decision-making processes and the prevention-related decisions of loved ones as well. Future prevention research for women at elevated risk should consider how their prior experiences with the cancer of friends or family members structure women's expectations of cancer risk, prevention, and outcomes.