UC Irvine

Lynch syndrome causes increased risks of developing colorectal, endometrial, ovarian, and other cancers. Current screening guidelines for gynecological cancers are vague and often left to a clinician’s discretion whether to recommend them. Individuals at risk of developing gynecological cancers often view screening as important whereas some providers believe it is more important to stress prophylactic hysterectomy and oophorectomy for their patients with Lynch syndrome. This study aimed to identify factors associated with decisions to undergo prophylactic surgery or pursue regular gynecological screening. A survey to collect information about individuals with Lynch syndrome was distributed to online and social media based support groups. Participants included 115 individuals without a history of gynecological cancer who had an intact uterus and/or ovaries when they received their genetic testing results identifying Lynch syndrome. Participants’ demographics, genetic testing and Lynch syndrome history, gynecological healthcare decisions, and Lynch syndrome education were collected. It was found that age, having less than a college degree, having children, not desiring future pregnancies, and having a previous non-gynecological cancer are significantly associated with choosing to undergo both prophylactic hysterectomy and oophorectomy.

Menopausal status at the time of genetic test results was also associated with the decision to undergo one or both surgeries. Characteristics that are associated with level of risk, including

individual gene mutation or family history of gynecological cancer, were not associated with surgical decisions. Receiving information about symptoms of gynecological cancer was significantly associated with pursuing regular gynecological cancer screening while receiving information about Lynch syndrome related gynecological cancer risks and gynecological cancer screening were approaching a significant association. Participant comments also provided insight into emotional factors experienced while navigating decisions to undergo gynecological cancer screening and/or prophylactic hysterectomy and oophorectomy. These results serve as a reminder that decision-making is not straightforward. Each person will be influenced by their personal experiences and healthcare encounters when making medical management decisions. Approaching encounters with patient centered care and information gained by listening to members of the Lynch syndrome community may help facilitate trusting relationships and ultimately empower patients to be aware of their personal risks and make confident, informed decisions about their gynecological health and wellness.