A follow-up study on men tested for BRCA1/BRCA2 mutations: impacts and coping processes.

OBJECTIVE: The objective of this study was to examine cognitive, emotional, and behavioral impacts of testing for germline mutations in breast/ovarian cancer-associated genes (BRCA1/BRCA2) among men who undergo genetic testing. METHODS: A cross-sectional study compared 51 mutation carriers with 30 men who tested negative for the mutations in both genes. Telephone interviews were conducted with all participants at a median of 4 years after disclosure of test results in a genetic counseling context. Testing-related distress, cancer risk perceptions, perceived behavioral changes following testing, and perceptions of breast cancer were measured using standard questionnaires. RESULTS: Up to 4 years postgenetic testing, 48% of those who tested positively report that the test increased their perceptions of risk, and 74% of them increased surveillance for cancer. Men who had been tested as non-carriers did not report increased perceived risk (0%) and relatively few increased surveillance (31%). Carriers were significantly more distressed from testing, perceived breast cancer as having less consequences and emotional effects on the patient, and as being more treatable than non-carriers. CONCLUSIONS: These results have implications with regard to the Self Regulatory Theory. They show that (i) illness representations are affected by fear-arousing health information; (ii) risk perceptions elicit health behaviors; and (iii) men tested for BRCA mutations have specific concerns that should be attended to.

Genetic counseling in hereditary breast/ovarian cancer in Israel: psychosocial impact and retention of genetic information.

Genetic counseling for individuals at high risk for developing breast and ovarian cancer (oncogenetic counseling) involves evaluation of cancer risk, psychological assessment, and genetic testing for germline mutations in BRCA1/BRCA2 genes. The long-term psychosocial impact of oncogenetic counseling on consultees and the retention of oncogenetic information are uncertain. We retrospectively interviewed 155 women who underwent oncogenetic counseling in a single medical center in Israel in 1996 (N = 50) and 1998 (N = 105). There were 29 (18.7%) BRCA1/BRCA2 mutation carriers and 126 non-carriers; 58 (37.4%) had a past or present history of cancer, and 97 (62.6%) were first-degree relatives within breast/ovarian cancer families. A questionnaire evaluating self-reported distress and anxiety symptoms before and after counseling, as well as the retention of relevant information (e.g., individual and offspring cancer risk, early detection schemes), one and three years after the initial consultation was administered. Overall, oncogenetic counseling had a minimal effect on anxiety-related symptoms. Mutation carriers reported anxiety-associated symptoms, such as sleeplessness and "bad mood", more frequently than non-carriers following oncogenetic counseling. As expected, 61.8% of carriers and only 30% of non-carriers accurately remembered the personal and offspring cancer risk and preventive and early detection schemes. We conclude that although there seemed to be slight worsening of anxiety-related symptoms following oncogenetic counseling in BRCA1/BRCA2 mutation carriers, these symptoms were minimal and did not affect everyday life activities. In addition, there is an ongoing need to emphasize oncogenetic information to high-risk individuals.