Falling through the cracks - Women's experiences of ineligibility for genetic testing for risk of breast cancer

OBJECTIVE To describe experiences of women seeking information about their risk of hereditary breast cancer who fail to meet strict eligibility criter ia for genetic counseling and testing. DESIGN Qualitative descriptive study. SETTING Hereditary cancer program in western Canada. PARTICIPANTS Women who had received notification of their ineligibility for referral for hereditary breast cancer risk assessment (n-20) and some of t heir referring physicians (n=10). Of 28 attempted contacts, five women had moved, one declined the invitation to participate, and two could not be int erviewed because of scheduling conflicts. Ten of 20 physicians declined the invitation to participate. METHOD In-depth, open-ended telephone interviews were conducted. Transcribe d interviews were systematically analyzed to identify salient themes. MAIN FINDINGS: Three themes emerged. The first theme, "It's always on your mind," points to the profound concern about breast cancer that underlies wo men's experiences in seeking genetic testing. The second theme, "A test is a test," reflects women's beliefs that the test was relatively simple and s imilar to other medical tests in that it would provide a definitive answer. The third theme, "Falling through the cracks," captures the experience of ineligibility. Women reacted with a range of emotional responses and were l eft frustrated in their search for more specific information about their pe rsonal risk for breast cancer. Although women were encouraged to contact th eir physicians, few did. CONCLUSION These findings point to the psychological consequences in women who seek genetic testing for risk of breast cancer when they are told they are ineligible and they are not given adequate information and support.