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 retrospective study assessed 98 BRCA mutation carriers who underwent RRSO about their preoperative counseling regarding symptoms to expect following surgery. The mean age at RRSO was 45.5 years (range, ages 32–63 years). Eighty-five percent pursued RRSO after learning that they harbored a BRCA mutation, and 48.0% were premenopausal at the time of surgery. Participants reported ‘‘frequent'' or ‘‘very frequent'' postsurgical symptoms of vaginal dryness (52.1%), changes in interest in sex (50.0%), sleep disturbances (46.7%), changes in sex life (43.9%), and hot flashes (42.9%). Only vaginal dryness and hot flashes were commonly recalled to have been addressed preoperatively. While 96% would have the surgery again, participants reported that the discussion of the impact of surgery on their sex life (59.2%), risk of coronary heart disease (57.1%), and the availability of sex counseling (57.1%) would have been helpful.
Several psychological interventions have been proposed for women who may have hereditary risk of breast cancer, but few of these have been rigorously tested. Issues faced by these women include the following:
- Confronting the meaning of one's risk status and venting strong feelings of fear of harm, disfigurement, pain, or death.
- Addressing guilt about passing on genetic risk or not doing enough for loved ones.
- Managing stress, cancer-related worry, and intrusive thoughts.
- Coaching in problem-solving.
- Facilitating effective decision-making strategies and teaching positive, active coping behaviors.
Psychotherapy for women interested in prophylactic mastectomy is discussed in one report. Another recommends rehearsal of affective state in the context of all potential outcomes of cancer genetic testing for BRCA1/BRCA2. As genetic testing programs grow and the psychological outcomes and behavioral impact of testing are further defined, there will be an increasing demand for interventions to maximize the benefits of cancer genetic testing and minimize the risks to carriers and family members.
A randomized trial with 126 BRCA1/BRCA2 mutation carriers evaluated whether psychological and behavioral outcomes of BRCA1/BRCA2 testing are improved among mutation carriers by providing a psychosocial telephone counseling intervention in addition to standard genetic counseling. The intervention consisted of five 60- to 90-minute telephone counseling sessions. The first session was a semistructured clinical assessment interview designed to allow the mutation carrier to describe her experiences and reactions to BRCA testing results. The second through the fourth telephone sessions were individualized to the concerns raised by the woman in the domains of making medical decisions, managing family concerns, and emotional reactions following receipt of a positive BRCA1/BRCA2 result. The final telephone session focused on integration and closure on the issues raised and implementation of a plan for short-term and long-term goals established during the telephone intervention. Women most likely to complete the intervention were those who did not have a personal history of cancer; those who had higher levels of cancer-specific distress; those who were college graduates; and those who were employed. Outcome data from this study has not yet been reported.