Assessing preventive gynecologic decisions in individuals with Lynch syndrome

Abstract

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.