Living With Genetic Test Results for Hereditary Breast and Ovarian Cancer

Abstract

To examine adaptation by nonsymptomatic individuals who knew the results of a genetic test for hereditary breast and ovarian cancer (HBOC) for at least 4 years. Longitudinal grounded theory study. Follow-up interviews after a 3- to 4-year interval were conducted by telephone or e-mail with seven asymptomatic participants originally recruited for an earlier study of genetic testing experiences. A total of 14 interviews, 2 for each participant were conducted. Conceptual analysis on these 14 interviews focused on impact on daily life and health behavior decisions made in the intervening years. Participants described the impact of the result and adaptations made in relationships, sexuality, outlook, and plans for the future. Participants accepted recommended surveillance and preventative measures to maximize a healthy lifestyle and reported both the benefits of knowing their mutation status as well as challenges they had encountered since testing. Adaptation to living with genetic test results indicating a disease-related mutation is an ongoing process of balancing the knowledge of risk with living a normal life. Over time, awareness of genetic risk does not appear to diminish. Positive and negative long-term consequences of genetic testing for hereditary breast or ovarian cancer may influence many aspects of the personal lives and health care decisions of those tested.