FORCE has a strong commitment to promoting research to benefit our community. We advocate for more research funding, educate people about available studies, and report findings back to our community.
by Lisa Rezende, PhD
The ABOUT Patient-Powered Research Network conducts research to provide individuals facing hereditary breast, ovarian, and related cancers with the information they need to make informed medical decisions. We are surveying our community to identify information and research gaps and to prioritize the research questions that most affect decision making.
Earlier this year, a research report was presented at the Society of Gynecological Oncologists (SGO) annual conference. That small study suggested that women with BRCA1 mutations have an increased, but still small risk of uterine cancer. FORCE discussed this finding with our advisory board and wrote a summary article for the community.1 Then we asked women at high risk for ovarian cancer what factors influenced their decisions regarding whether or not to undergo hysterectomy, or surgical removal of the uterus, when undergoing surgery to remove ovaries and fallopian tubes (bilateral salpingo-oophorectomy or BSO) to reduce ovarian cancer risk. Our survey was open to both women who had risk-reducing surgery and women who had not undergone risk-reducing surgery. The survey is still open for high-risk women who would like to contribute their experiences and preferences. To date, over 550 of you have responded so far. Here’s what you told us:
Our community is evenly split between those who kept their uterus and those who removed it.
One of the most striking findings is the near 50:50 split between women who removed their uterus (49.5%) and women who kept theirs (50.5%). The 50/50 split held up whether women had a BRCA1 or BRCA2 gene mutation. This lack of consensus is not surprising because currently no national guidelines exist on whether or not a BRCA mutation carrier should remove her uterus. In the absence of guidelines, women and their doctors make the choice together.
We asked what factors influenced your decision and we found that:
If you had surgery, doctors’ recommendations weighed heavily in your decisions.
A doctor’s recommendation was the most commonly cited factor that influenced whether a woman kept or removed her uterus: 41% of women who removed their uterus and 38% of women who kept their uterus. This speaks to the trust women have in their physicians, and the need to chose a health care team that specializes in high-risk women. This is an interesting finding—it makes sense that the opinions of physicians play a strong role in women’s health decisions. But in this case, doctors have no guidelines to follow, and based on your reports, it appears that they are almost equally split in recommending for and against hysterectomy. We know very little about what is prompting these recommendations; a survey for health care providers could help answer this question.
We did not ask to what extent your personal preferences were taken into account by your physician. Future surveys and research will address the degree of shared decision making between patient and health care providers when making treatment decisions in the absence of clinical guidelines. From the survey, we did see that 10% of you kept your uterus despite doctor recommendations to remove it, and 4% of you removed your uterus despite doctor recommendation against hysterectomy.
Many of you mentioned in the comments that your insurance would only cover removal of ovaries and fallopian tubes for high-risk women. This speaks to the need to assure that insurance issues do not get in the way of informed shared decision making between physicians and patients.
Many women are uncertain whether or not to remove their uterus when they have their ovaries and fallopian tubes removed.
We also asked women who are considering surgery whether or not they plan to remove their uterus as well. The largest group, 41% of women, remains undecided; about a third (33%) plan to remove their uterus; and 23% intend to keep their uterus.
The women identified the following factors that are likely to play a role in their decision:
Women differ in how much uterine cancer risk is high enough to consider hysterectomy.
How high does your risk for uterine cancer have to be to consider hysterectomy? The answer is very individual. Women who responded to our survey varied widely in their tolerance for uterine cancer risk. The largest group of women, 22%, said they did not know at what risk they would consider hysterectomy. The article accompanying the survey found an estimated 4% lifetime risk of uterine cancer in BRCA1 mutation carriers. Interestingly, only 6% of women said a risk of 2-6% was sufficient to consider hysterectomy.
Pelvic exams are the most common follow-up care after surgery to remove ovaries.
Annual or twice-yearly pelvic exams are the most common follow-up care (in 80% of women) after prophylactic oophorectomy. Despite the lack of post-surgical screening guidelines, about 34% of women still have their CA-125 levels measured at least once per year, and 15% continue to have transvaginal ultrasound. Many women also expressed that they were unsure what follow-up care they should receive, and some noted that they had received different advice from different doctors.
A majority of women do not take hormone replacement therapy.
Another striking finding is the relatively low number—only 30%—of women who said they currently use hormone replacement therapy (HRT) after removal of their ovaries. This group included older women and breast cancer survivors who may not be good candidates for HRT. Among women under the age of 50 who had never had cancer, 50% were taking HRT and 50% of women were not. Future surveys will look deeper at the decision to take or forgo HRT.
All women who had BSO
Women under 50 who have never had cancer
Women indicated that after having BSO, reading our summary on uterine cancer risk changed their opinion on the health care decisions they made or might make in the future.
31% of women with BRCA1 mutations who had BSO without hysterectomy indicated that reading the article changed their opinion on health care decisions compared with 6% of women with BRCA2 mutations who had BSO without hysterectomy.
Women want more information on which to base their decisions.
When we asked which topics you felt needed to be addressed through research or more information to assist your decision-making, you said that you would like:
Several respondents felt that the risk for aggressive uterine cancer was so small that the report might cause unfounded fear and panic. The media, however, somewhat sensationalized the research. The Huffington Post’s headline, for example, stated, “BRCA Gene Mutation Could Also Raise the Risk of Deadly Uterine Cancer.”
Our article, which many said was clear and helpful in understanding the amount of risk for uterine cancer, is one of the topics that our members turn to FORCE for support or information.
We appreciate everyone who participated. Your responses will help us guide research and information where you tell us it is most needed. This survey has helped us determine that:
The ABOUT Network Research Registry will be looking at long-term outcomes in our community. If you have not yet joined our registry and would like to help us accelerate HBOC research, you can learn more about enrolling here.
1Rezende, LF “Is Risk of Uterine Cancer Increased in BRCA Mutation Carriers?” FORCE Research Findings, 2014.