Psychological distress and decision‐making factors for prophylactic bilateral mastectomy in cancer‐unaffected BRCA1/2 pathogenic variant carriers

Abstract

Objective Women carrying a BRCA1/2 pathogenic variant have an increased risk for breast cancer and may opt for risk‐reducing bilateral mastectomy. In this study, we examine which demographic, psychosocial, and personality factors are associated with their decision to undergo risk‐reducing bilateral mastectomy. Methods Cancer‐unaffected women with a pathogenic variant in BRCA1 or BRCA2 were recruited before receiving their genetic test result and completed follow‐up including decision to undergo mastectomy over 6–8 months after genetic test result disclosure. Anxiety, depression, breast cancer worry, personality and sociodemographic data were assessed. Results A total of 125 cancer‐unaffected women were included in the analysis. Participants were found to have higher anxiety levels than the general female population regardless of mastectomy decision. Breast cancer worry was higher among women who opted for risk‐reducing mastectomy and did not decrease over time. By contrast, women who did not opt for surgery experienced decreasing levels of breast cancer worry. Regression analysis found that women with a pathogenic variant in BRCA1, younger women and women with higher breast cancer worry were more likely to opt for surgery. Conclusions Our study provides valuable insights into the factors that influence women with a BRCA1/2 pathogenic variant to undergo risk‐reducing mastectomy. These findings may be helpful in understanding individual differences in decision‐making concerning preventive options and show the need to address negative anticipatory feelings associated with carrying a pathogenic variant in a high breast cancer risk gene in clinical care.

Patient perspective in perceived comparative genetic mutation risk: An exploratory review

“…In Table 1, screened scientific studies are reported, highlighting the details of the 17 research protocols distributed by observational (OB) and RCT study designs. The emotional traits of BRCA1/2 mutation patients with a family/ personal history of cancer have been investigated in 5 observational studies 16,[19][20][21]24 No study has evidenced significant signs of anxiety, depression and stress in pre-and post-genetic counselling. However, Christie et al 16 showed reduced intrusive cancer-related thoughts in result disclosures.…”

“…The findings highlighted no stress or worry dimensions when comparing patient groups featuring high/low risk for HBOC mutations. Moreover, in the test-retest study (range: 12 months), the perceived stress dimension was moderated by genetic counselling.Considering observational studies, 71%[14][15][16][17][18][19][20][21][22][23][24][25] investigated the emotional variables in patients affected by various cancer diagnoses (BRCA1/2, CDKN2A, pancreatic cancer and Lynch syndrome) and asked for genetic counselling. Research protocols were based on pre-, post-and follow-up genetic counselling sessions and the outcome of psychological evaluations showed no severe psychopathological symptoms.…”

Primary Prevention and Early Detection of Hereditary Breast Cancer

“…Risk communication and counseling are not to be underestimated challenges for counseling physicians to convey extensive information on individual risk combined with comprehensive information on risk management to enable counselees to preference-sensitive decisions while at the same time preventing counselees from intellectual or emotional overload. It has been shown that perceived control and reduction of psychological distress are eminent for comprehensive decision making [5, 66]. Several approaches to support medical counseling have been developed [67].…”

Patient and procedure characteristics associated with postoperative pain after prophylactic versus therapeutic ambulatory bilateral breast surgery

“…5 Younger women's decision to undergo prophylactic bilateral mastectomy is often driven by fear and anxiety. 13,14 Of note, only a small proportion of women who underwent a risk-reducing mastectomy report regrets about the procedure, including concerns related to residual pain. 15 No differences in long-term postoperative pain were found for patients undergoing risk-reducing versus therapeutic skin-sparing mastectomy.…”

“…Among other factors, risk‐reducing bilateral mastectomy with reconstruction has been reported to be associated with more pain 1 week after surgery 5 . Younger women's decision to undergo prophylactic bilateral mastectomy is often driven by fear and anxiety 13,14 . Of note, only a small proportion of women who underwent a risk‐reducing mastectomy report regrets about the procedure, including concerns related to residual pain 15 .…”