Background: Lynch syndrome (LS), the most common hereditary colorectal cancer syndrome, also causes an increased risk for ovarian cancer. Only risk-reducing gynecologic surgery is effective at reducing risk for ovarian cancer. However, risk-reducing oophorectomy, particularly for premenopausal individuals, can increase risks for cardiovascular disease, osteoporosis, and dementia, while also impacting sexual functioning, social and romantic relationships, body image, and perception of gender identity. The extent to which these factors play a role in decision-making for or against risk-reducing gynecologic surgery is poorly understood.
Methods: We conducted semi-structured interviews with 20 women with Lynch syndrome, 18 of whom had received their genetic result from Geisinger’s MyCode Community Health Initiative. Participants answered open-ended questions about risk-reduction decisions for Lynch-related cancers and more targeted questions about the degree to which concerns about cardiovascular disease, osteoporosis, and early menopause feature in their thinking and decision-making around risk-reducing oophorectomy. Interview data was analyzed using thematic analysis and triangulated with chart review data to identify areas of complementary, convergence, and dissonance between patient reported experiences and clinician documentation patterns.
Results: Interview participants had pathogenic or likely pathogenic variants in both high penetrance (n=6) and low penetrance (n=14) LS genes. Content analysis of individuals who had undergone oophorectomy showed that the majority considered menopause as a factor in their decision-making but did not consider cardiovascular health, cognitive health, or sexual function. Thematic analysis of interviews revealed contextual factors of decision-making such as cancer risk-perception, temporality/relationship to past and future, and self-perception and relationship to constructs of femininity and youth.
Authors: Jazmine Gabriel, Geisinger College of Health Sciences ; Olivia Granja , Geisinger Commonwealth School of Medicine ; Gina Rossi ,Geisinger Commonwealth School of Medicine ; Chanielle Cooper , Geisinger Commonwealth School of Medicine ; Lavanya Garnepudi , Geisinger Medical Center ; Annum Hayat , Geisinger Medical Center ; Katrina Romagnoli , Department of Population Health Sciences, Research Institute, Geisinger
