In 2008, FORCE surveyed our community to establish hereditary cancer research priorities. One of the top four priorities was the development of new cancer prevention options.
An important step in designing research is determining whether there is a need and whether or not the target population would enroll in the study. We conducted a survey to determine our community’s interest in participating in ovarian cancer prevention and to advocate for more prevention research. The survey is still open to high-risk women who:
- have a BRCA mutation, Lynch Syndrome, or ovarian cancer runs in their family
- have not been diagnosed with ovarian cancer and still have one or both ovaries
As part of the hereditary cancer research updates session at our conference I presented findings from this ongoing survey. Below is a summary of my presentation of preliminary survey findings based on the first 333 eligible respondents. We are actively working with researchers to further evaluate the results and help determine the next steps for research.
Would you be interested in participating in a study of PARP Inhibitors to lower the risk for ovarian cancer?
1/3 of our respondents indicated that they would be interested in participating in a PARP inhibitor chemoprevention study.
How acceptable would any of the following be to you?
Most respondents indicated that they were willing to take a PARP inhibitor for up to 60 days, avoid getting pregnant, traveling for evaluations, and blood draws from a lab.
Please specify why you would or would not participate
When asked for details on why they would or would not participate, 11% expressed concern about side effects. 2% indicated that they wanted to help research. And 5% indicated that they wanted nonsurgical options.
Please share any other thoughts about participating in a PARP inhibitor ovarian cancer prevention study
These are some of the responses from our members.
“ I am not planning to have my ovaries removed for 5-10 years and I would be willing to help during that time.”
“…to move this important research forward I am willing to do most anything that won’t cause me harm.”
Would you be interested in participating in a study of bilateral salpingectomy (removal of both fallopian tubes while retaining the ovaries) to lower the risk for ovarian cancer?
After explaining what salpingectomy was, we asked if respondents would be interested in participating in such a study. Almost 1/3 of our respondents indicated a willingness to undergo prophylactic salpingectomy.
Prior to this survey were you aware that oral contraceptives may lower the risk for ovarian cancer in high risk women?
Most of our respondents were aware of the preventive benefits of oral contraceptives for ovarian cancer and most had taken them. Yet despite that, they were still interested in other preventive options.
Is there any other feedback you would like to share with us?
“…it’s tempting to keep the ovaries, because undergoing surgical menopause during my sexual peak feels like another cruel, cruel hand dealt to the BRCA patient…”
“I am aware that without research these things cannot become available. I feel strongly that we need more knowledge and I am happy to help.”
“Ovarian cancer is terrifying, but so is early menopause. I would love another option.”
Some high-risk women have, or are considering pursuing salpingectomy outside of research.
“I am already considering a salpingectomy both for birth control and to reduce risk of ovarian cancer.”
“I also want to keep my ovaries for as long as possible and have been asking my gynecologist to take out my tubes as a better-than-nothing prophylactic measure for now.”
“I’ve been following recent research and pestering my doctors about this option. I know my ovaries should come out before age 40, but sign me up for the salpingectomy in the meantime.”
“I made the choice to have my tubes and one ovary removed last year. For me, it felt like the right decision. It was done almost a year ago and I have zero regrets about the surgery.”
The community at high risk for ovarian cancer is VERY motivated to participate in prevention research. We need to make more ovarian cancer prevention studies available or we will miss an opportunity to get answers. If you are a high-risk woman and would like to participate, here is a link to our survey. If you are a researcher and you are interested in collaborating with us or want more information on the pilot data, please contact us at email@example.com.