Catalysts to withdrawal from familial ovarian cancer screening for surgery and reactions to discontinued screening: a qualitative study

Abstract

Women at high risk of familial ovarian cancer face a potentially difficult risk management choice between unproven ovarian cancer screening (OCS) and bilateral salpingo-oophorectomy (BSO). It is not fully understood why women who initially opt for OCS may later undergo BSO, nor what the impact of this may be. This study explored the catalysts for surgery and reactions to discontinuing OCS. Semi-structured interviews were completed with 21 women who had undergone surgery having initially chosen OCS to explore their screening experiences, reasons for and feelings about surgery, and reactions to discontinuing OCS. The invasive nature and frequency of OCS were not by themselves a catalyst for surgery. A number of catalysts, including abnormal OCS test results, and secondary considerations, such as age-related factors, were found to prompt surgery. The emotional impact of discontinuing OCS following BSO varied between relief, acceptance, and loss of reassurance. OCS appears to be an acceptable risk management strategy under certain circumstances, but varying factors can prompt the decision to opt instead for BSO. The complexity of this management change decision should not be underestimated and needs to be taken into account by clinicians assisting women making choices. These findings highlight the importance of the timing of decision-making about BSO and that risk management options need routine reconsideration, through clinical discussions, information and support.