Psychosocial Issues in Inherited Breast Cancer Syndromes
Further work reported by this group found that the majority of the 127 women who had undergone RRSO 1 year previously (75 with BRCA1 mutations; 52 with BRCA2 mutations) felt that RRSO reduced their risk of both breast and ovarian cancer. There was a wide range of risk perceptions for ovarian cancer noted in the group. Twenty percent of BRCA1 and BRCA2 mutation carriers thought that their risk for ovarian cancer was completely eliminated; others had an inflated perception of their ovarian cancer risk both before and after surgery. A small group of these women were further surveyed at about 3 years postsurgery and their risk perceptions did not change significantly during this extended time period. These findings suggest that important misperceptions about ovarian cancer risk may persist after RRSO. Additional genetic education and counseling may be warranted.
A larger study assessed quality of life in women at high risk of ovarian cancer who opted for periodic gynecologic screening (GS) versus those who underwent RRSO. Eight hundred forty-six high-risk women, 44% of whom underwent RRSO and 56% of whom chose GS, completed questionnaires evaluating quality of life, cancer-specific distress, endocrine symptoms, and sexual functioning. Women in the RRSO group were a mean of 2.8 �1.9 years from surgery and women in the GS group were a mean of 4.3 years from their first visit to a gynecologist for high-risk management. No statistical difference in overall quality of life was detected between the RRSO and GS groups. When compared with the GS group, women who underwent RRSO had poorer sexual functioning and more endocrine symptoms such as vaginal dryness, dyspareunia, and hot flashes. Women who underwent RRSO experienced lower levels of breast and ovarian cancer distress and had a more favorable perception of cancer risk.
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.