Factors associated with deciding between risk-reducing salpingo-oophorectomy and ovarian cancer screening among high-risk women enrolled in GOG-0199: An NRG Oncology/Gynecologic Oncology Group study

Abstract

Objectives Women at increased genetic risk of ovarian cancer (OC) are recommended to have risk-reducing salpingo-oophorectomy (RRSO) after completion of reproductive planning. Effective screening has not been established, and novel screening modalities are being evaluated. Methods Participants chose either RRSO or a novel OC screening regimen (OCS) as their risk management option, and provided demographic and other data on BRCA mutation status, cancer worry, perceived intervention risks/benefits, perceived cancer risk, and quality-of-life at enrollment. We performed univariate and multivariate analyses to evaluate factors influencing decision between RRSO and OCS. Results Of 2,287 participants enrolled, 904 (40%) chose RRSO and 1,383 (60%) chose OCS. Compared with participants choosing OCS, participants choosing RRSO were older (p<0.0001), more likely to carry deleterious BRCA1/2 mutations (p<0.0001), perceive RRSO as effective, be more concerned about surgical harms and OCS limitations, and report higher perceived OC risk and OC-related worry. OCS participants were more likely to perceive screening as effective, be more concerned about menopausal symptoms, infertility, and loss of femininity, and report better overall quality-of-life. Twenty-four percent of participants believed they would definitely develop OC, and half estimated their lifetime OC risk as >50%, both higher than objective risk estimates. Conclusions Cancer worry, BRCA1/2 mutation status, and perceived intervention-related risks and benefits were associated with choosing between RRSO and OCS. Efforts to promote individualized, evidence-based, shared medical decision-making among high-risk women facing management choices should focus on conveying accurate OC risk estimates, clarifying the current understanding of intervention-related benefits and limitations, and addressing OC worry.

Concerns and Expectations of Risk-Reducing Surgery in Women with Hereditary Breast and Ovarian Cancer Syndrome

“…However, the reliability of the evidence is very low, and the authors could not draw definitive conclusions. Mai et al [13] found that concerns about menopausal symptoms and loss of fertility, and the perception that “surveillance was less invasive and radical than surgery,” were associated with a higher likelihood of choosing OC surveillance.…”

“…However, many factors can influence the carrier’s decision-making process [3,7] and “a posteriori” satisfaction with her own choice. Such factors might be psychological (as perceived cancer risk [5,8,9], anxiety in carrier with a previous BC [6] or body image perception [10,11]); related to surgical procedure (as in the case of expected [12,13] or unexpected side effects [14]); or linked to carriers’ quality of life, fertility, and sexuality [15,16,17,18,19]. Unfortunately, previously published studies are often focused on single aspects of the Risk-Reducing procedures in high-risk women [6,12,15,20,21,22,23,24] and composed of heterogeneous populations (high-risk women or BRCA carriers and women with previous breast cancer).…”

Fertility preservation in BRCA mutation carriers—efficacy and safety issues: a review

“…The survey also discovered that the majority of respondents (58.7%) thought women with BRCA mutation should be offered with PGD as a choice. However, only 34.8% of respondents would consider undergoing PGD themselves to reduce the risk of transmitting the mutation to their offspring [110]. Moreover, PGD involves discarding normal embryos and this may not be acceptable from an emotional, religious, or ethical point of view [111].…”

Recommendations and Choices for BRCA Mutation Carriers at Risk for Ovarian Cancer: A Complicated Decision

“…To assess effects of identified cancer burden, a large Gynecologic Oncology Group (GOG) trial evaluated 2287 questionnaires in high risk women that measured worry, perceived cancer risk, risks vs. benefits, and quality of life. The more invasive RRSO option, which 40% of the participants chose, was associated with higher perceived risk and worry [ 68 ]. Half of all the participants estimated their lifetime ovarian cancer risk to be >50%, which is greater than the actual risk.…”