Lynch syndrome (LS) is a genetic condition conferring an elevated risk of gastrointestinal, gynecologic and other malignancies, often before the age of 50. Current guidelines recommend prophylactic gynecologic surgery to manage inherited cancers for female mutation carriers. Data is lacking on women's quality of life following surgery. In this pilot study, we explored how women described their quality of life post-prophylactic gynecologic surgery and the factors that affected post-surgery experiences. A qualitative interview study was the chosen design. Ten female Lynch syndrome mutation carriers were interviewed by phone. Interviews were transcribed and analysed for themes relating to quality of life post-surgery using content analysis and constant comparison. Women largely reported doing well since their surgeries, though all described deleterious impacts on quality of life. Positive impacts of surgery included a reduction in cancer worry and an increase in healthy lifestyle behaviors, while negative impacts due to the sudden onset of menopause and impact on sexual function were common. Pre-surgical knowledge, drug and topical therapies, and post-surgical support all contributed to a positive quality of life. This small pilot study revealed increased endocrine symptoms and a negative impact on sexual health following prophylactic gynecological surgery. Women who were informed of potential symptoms pre-surgery coped better with surgical outcomes, as did women using some form of HRT. All women experienced reduced cancer worry post-surgery. Findings highlight areas for discussion in pre-operative settings (e.g., sexual health), as well as the need for better follow-up support post-surgery.
Carrier; Gynecologic cancer; Lynch syndrome; Qualitative; Quality of life
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