Assessing preventive gynecologic decisions in individuals with Lynch syndrome.
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BACKGROUND: Lynch syndrome causes increased risks of colorectal, endometrial, ovarian, and other cancers. Current guidelines for managing Lynch-associated ovarian and uterine cancer risks are vague and left to a clinician's discretion. This study aimed to identify factors associated with an individual's decision to undergo risk-reducing surgery or gynecologic screening. METHODS: A survey for individuals with Lynch syndrome was distributed to social media-based support groups. Eligible participants included individuals without a history of gynecologic cancer who had an intact uterus and/or ovaries when they were diagnosed with Lynch syndrome. RESULTS: The majority of the 115 participants identified as women (98.3 %), were age 30-49 (61.8 %), were non-Hispanic White (93.0 %), had a college degree or higher (80 %), were premenopausal at the time of genetic testing (69.6 %), had no prior cancer diagnosis (66.0 %), and had at least one biological child (73.9 %). Overall, 71 (61.8 %) participants completed risk-reducing surgery. The survey found that increasing age, having less than a college degree, having children, not desiring future pregnancies, menopausal status, and having a previous non-gynecologic cancer were significantly associated with choosing to undergo risk-reducing surgery. However, cancer risk factors, including family history of gynecologic cancer or which Lynch-associated gene was involved, were not associated with surgical decisions. Participant comments also provided insight into emotional factors experienced while navigating screening or surgical decisions. CONCLUSION: The results of this study may help clinicians better understand preventive decisions, which will ultimately empower patients to make confident, informed decisions about their gynecologic health.