Genetics of Breast and Ovarian Cancer (PDQ®): Genetics - Health Professional Information [NCI] - Psychosocial Issues in Inherited Breast Cancer Syndromes
Table 11. Uptake of Risk-reducing Salpingo-oophorectomy (RRSO) and/or Gynecologic Screening AmongBRCA1andBRCA2Mutation Carriers continued...
A pilot study demonstrated the usefulness of a six-session psychoeducational support group for women at high genetic risk of breast cancer who were considering prophylactic mastectomy. The themes for the group sessions included overestimation of and anxiety about risk, desire for hard data, emotional impact of watching a mother die of breast cancer, concerns about spouse reactions, self-image and body image, the decision-making process, and confusion over whom to trust in decision-making. Both the participants and the multidisciplinary leaders concluded that as a supplement to individual counseling, a support group is a beneficial and cost-effective treatment modality.
A prospective study from the Netherlands  involving 163 newly-identified BRCA mutation carriers with no history of cancer considered the effects of psychoeducational support sessions on completion of intended risk management preferences (breast cancer surveillance or prophylactic mastectomy). All were offered the opportunity to participate in eight sessions focused on psychosocial (five sessions) and medical information (three sessions) following the receipt of test results. The number of women with a preference for mastectomy following receipt of test results who actually had a mastectomy at follow-up (median 2 years) was higher in the group that attended the psychoeducational support sessions compared with those who did not attend (89% and 63%, respectively; OR, 4.8; P = .04).
Women who called the National Cancer Institute's Cancer Information Service seeking information about breast or ovarian cancer risk, risk assessment, or cancer genetic testing, were randomly assigned to receive (1) general information about cancer risk and a referral to testing and counseling services or (2) an educational intervention designed to increase knowledge and understanding about inherited cancer risk, personal history of cancer, and the benefits and limitations of genetic testing. In the group receiving the educational intervention, intention to obtain genetic testing decreased among women at average breast cancer risk (as determined by the Gail model) and increased among women at high risk. Among average risk women, those in the intervention group identified as high monitors (i.e., those who seek and pay greater attention to threatening health-related information) demonstrated an increase in knowledge and breast cancer risk perceptions compared with low monitors (i.e., those who avoid attending to threatening health-related information).
A study  of screening behaviors of 216 self-referred, high-risk (>10% risk of carrying a BRCA1/BRCA2 mutation) women who are members of hereditary breast cancer families found a range of screening practices. Even the presence of known mutations in their families was not associated with good adherence to recommended screening practices. Sixty-nine percent of women aged 50 to 64 years and 83% of women aged 40 to 49 years had had a screening mammogram in the previous year. Twenty percent of participants had ever had a CA 125 test and 31% had ever had a pelvic or TVUS. Further analysis of this study population  looking specifically at 107 women with informative BRCA test results found good use of breast cancer screening, though the uptake rate in younger carriers is lower. The reason for the lower uptake rate was not explored in this study. One survey of screening behaviors among women at increased risk of breast/ovarian cancer identified physician recommendations as a significant factor in adherence to screening.