Satisfaction and Quality of Life of Healthy and Unilateral Diseased BRCA1/2 Pathogenic Variant Carriers after Risk-Reducing Mastectomy and Reconstruction Using the BREAST-Q Questionnaire

Abstract

Risk-reducing mastectomy (RRM) is the most efficient form of breast cancer (BC) risk reduction in BRCA1/2 pathogenic variant (pV) carriers. However, this intervention in physical integrity is associated with significant morbidity. We assessed long-term perception of satisfaction and health-related quality of life (QoL) after bilateral RRM and reconstruction using the validated BREAST-Q. We searched the prospective database of the Center for Hereditary Breast and Ovarian Cancer Cologne for previvors and survivors who underwent bilateral RRM from 1994 to 2015 and evaluated the results of their BREAST-Q scores. The study enrolled 43 previvors and 90 survivors after a mean follow-up of 46.3 ± 45.3 months after RRM. Satisfaction and QoL were independent of the technique of RRM or type of reconstruction but depended on the time of RRM. Compared to survivors, previvors had significantly higher mean satisfaction scores in their psychosocial, sexual, and physical well-being (chest) in both modules. Among previvors and survivors, higher psychological well-being correlated with a higher satisfaction with information and higher satisfaction with outcome. As psychological well-being correlated with satisfaction with information and outcome, we developed decision aids to improve shared decision making and long-term satisfaction with the decision and the postoperative outcome.

Quality of life after risk-reducing surgery for breast and ovarian cancer prevention: a systematic review and meta-analysis

“…Metcalfe 64 found better sexual well-being after nipple and areola-sparing RRM vs. skin-sparing RRM. However, another eight studies 49,62,63,[65][66][67][68]70 reported unchanged sexual function (pleasure/discomfort/habit) after RRM with reconstruction.…”

“…The HRQoL including physical and mental components was unaffected in twelve studies 49, [56][57][58][59][60][61][62][63][64][65][66] and improved in one study 67 following RRM. Geiger 59 found similar long-term HRQoL in both high-risk women undergoing RRM and controls.…”

“…56 -Body image Women reported satisfactory aesthetic outcomes following RRM with reconstruction. 49,60,62,63,66,69,70 Women undergoing reconstruction following RRM reported higher satisfaction with general body shape and appearance than those without reconstruction. 65 Additionally, women reported better body image with nipple and areolasparing RRM than skin-sparing RRM; 64 and higher satisfaction with breasts following J o u r n a l P r e -p r o o f autologous reconstruction than implant-based reconstruction.…”

Counselling Framework for Germline BRCA1/2 and PALB2 Carriers Considering Risk-Reducing Mastectomy

“…Patients also reported a strong desire to see photographs that would allow them to prepare for the final result. Satisfaction with the information obtained preoperatively appears to be directly related to satisfaction with the postoperative outcome, highlighting the importance of informed, shared decision-making around RRM [109].…”

Prophylactic Risk‐Reducing Mastectomy (PRRM): A Set Practice or Catch‐22 Situation in LMIC. A Single‐Centre Prospective Cohort Study

“…This BRCA1/2 positivity makes the affected susceptible to the risk of developing BC by 40–80%, making genetic testing even more crucial; because by offering bilateral risk‐reducing mastectomy (BRRM), this risk is reduced to ≥ 90% [9, 10]. Also, after PRRM, there is an improvement in BC‐specific survival, quality of life (QOL) and satisfaction rate in both BRCA1/2 carriers and patients [11, 12]. Previously, none of the centres in the country was offering genetic counselling and testing due to logistics constraints.…”