Psychological impact of risk-reducing surgery for gynecologic cancer among women with Lynch syndrome

Abstract

Objective

Prophylactic total hysterectomy and bilateral salpingo-oophorectomy are risk-reducing surgeries (RRS) that can be offered to women with Lynch syndrome (LS) as they reduce the incidence of ovarian and endometrial cancer. Few studies have examined facilitators to RRS or the experiences of women with LS post-surgery. This qualitative study explored the experiences of women with LS who underwent RRS.

Methods

Women with LS who had undergone RRS within the prior 10 years were recruited from a genetic cancer registry and a tertiary care medical centre in Canada. Participants completed interviews over the phone. A qualitative descriptive methodological approach was taken, and interviews were analyzed using thematic analysis.

Results

Fifteen participants completed interviews. Themes identified included: 1) facilitators to RRS including desire for peace of mind, completed family planning, presence of physical symptoms associated with gynecologic cancer, burden of screening, personal or family history of cancer, age, and trust in healthcare providers (HCPs); 2) women’s experiences with RRS including post-surgical recovery, long-term physical changes post-surgery, impact of surgery on sexual health, psychological impacts of managing risk, and post-surgical care from HCPs; 3) experiences managing menopausal symptoms and use of hormone replacement therapy; and 4) unmet informational needs including managing expectations prior to surgery, understanding risk related to other health conditions, and questions about the ongoing need for gynecologic cancer surveillance.

Conclusions

HCPs should consider facilitators to surgery in women with LS contemplating RRS. HCPs should also provide women with LS more detailed post-surgery information on what to expect, and risks of other health conditions.