KNOW MORE is a new campaign designed by FORCE to inform every woman diagnosed with ovarian, fallopian tube, and primary peritoneal cancer about national guidelines on genetic counseling and testing for inherited gene mutations.
We kicked off the campaign by launching a brief survey to better understand how women with ovarian cancer make decisions around genetic testing. This blog shares what we learned from women with ovarian cancer who took our survey.
Initial finding from our survey
An important finding from our survey is that about 2/3 of the women who had genetic testing did so before 2014; about 1/2 of these women tested negative.
This is important information because genetic testing technology has improved over the past several years. Some survivors and their families who previously had BRCA genetic testing may now benefit from additional genetic counseling and testing because:
- In the past, some tests failed to identify certain BRCA1 and BRCA2 mutations known as “rearrangements,” as well as other mutations. Newer tests can identify these rearrangements.
- Mutations in other genes can cause inherited ovarian cancers, such as the genes known to cause Lynch syndrome.
- Some new panel tests scan for mutations in dozens of genes that are not associated with a specific cancer syndrome, but may still put an individual at a higher risk of cancer than the average person. Such panels look for mutations in genes that are known to increase cancer risk, such as BRIP1 and PALB2.
- Knowing that you have a mutation could make you or your relatives eligible for different types of treatment, clinical trials, screening and other risk management options.
Genetics experts can help patients to understand how their unique genetic profile affects their cancer risk, and the steps they can take to lower their risk of developing cancer and increase their chances of survival. If you are an ovarian cancer survivor whose genetic test was done several years ago and your test was negative, you want to consult with a genetic counselor to see if additional testing is right for you.
Improved knowledge can lead to improved outcomes
One in 5 ovarian cancer survivors have an inherited genetic mutation that caused their cancer. There are many reasons why genetic information can affect medical decisions and improve medical outcomes for women with ovarian cancer and their relative.
Free guidance and personalized support
Navigating decisions around genetic testing can be confusing, and it helps to hear from others who have been in your shoes. FORCE’s Peer Navigation Program provides expert reviewed resources and 1:1 personalized peer support by specially trained volunteers who have also been diagnosed with ovarian cancer.
Tags: brca, brca research, BRCA1, BRCA2, gene testing, Genetic counseling, genetic testing, HBOC, hereditary cancer, hereditary cancer research, Lynch Syndrome, ovarian cancer, PALB2, survivor, young survivor