Emerging research and engagement survey
National guidelines (NCCN) recommend risk-reducing removal of the ovaries and tubes for women with a BRCA1 or BRCA2 mutation between the ages of 35-40 and when childbearing is complete. However there are no guidelines and little research on patient outcomes to guide decision-making around whether or not women should remove their uterus at the same time. Based on our ABOUT engagement survey, about ½ of women with mutations remove their uterus and the other half do not. This study would look at the long-term outcomes and satisfaction level for women with mutations with and without hysterectomy to determine which option leads to the best outcomes for which patients.
Our Steering Committee and Research Work Group gave this study a prioritization score of 3.21 out of 4 points, meaning this is a high-priority study. This study ranked 2nd in
priority scores among the first group of study questions.
Our Executive Committee and research team considered the feasibility of this
study as high, meaning it has been promoted to the planning phase.
Recommend promotion to Planning Phase
Our Steering Committee prioritizes questions based on four parameters on a scale from 1-4. Here are the average scores:
Our Executive Committee scored feasibility as high based on the following considerations:
Shu CA, Pike MC, Kauff ND, et. al. Uterine Cancer After Risk-Reducing Salpingo-oophorectomy Without Hysterectomy in Women With BRCA Mutations. JAMA Oncol. 2016 Nov 1;2(11):1434-1440.
Engagement Survey Results: How Do Women Decide Whether Or Not To Remove Their Uterus During BSO?
Previvors/High risk people
People with a BRCA mutation
People with an ATM, PALB2, PTEN, or other mutation that increases cancer risk
People with Lynch Syndrome
People at high risk for breast cancer
People at high risk for ovarian cancer
People who are newly diagnosed with cancer