FORCE’s KNOW MORE campaign helps women diagnosed with ovarian, fallopian tube, or primary peritoneal cancer make informed decisions about genetic counseling and testing for inherited mutations. To better understand their information needs, we launched a survey for women with ovarian cancer. Over 1,600 women completed our survey. This blog continues our series on survey results.
How many women with ovarian cancer were recommended to have testing?
A majority of respondents indicated that their provider had recommended genetic counseling and/or testing at the time of their diagnosis. Not surprisingly, the percentage of women who received a recommendation to undergo testing increased over the years from 1999 to 2016. When BRCA testing first became available in 1995, many experts believed that about 10% of ovarian cancer was caused by an inherited mutation. As genetic testing technology has improved, research has shown that the connection between ovarian cancer and inherited mutations is stronger than initially believed. Experts now estimate that about 20% of ovarian cancer is caused by an inherited genetic mutation. Because of this, national guidelines recommend that all women with ovarian cancer learn about genetic testing.
It makes sense that the percentage of women being recommended for testing also went up after 2015. In December 2014, a new therapy called Lynparza received FDA approval to treat ovarian cancer in women with a BRCA mutation who had recurred after three prior lines of chemotherapy.
What information was provided to women undergoing genetic testing?
We asked women with ovarian cancer about the information they were given when they were deciding about genetic testing and inherited mutations.
- 60% of respondents indicated that they were told that genetic test results could affect their treatment options.
- Less than half of the respondents were told that genetic test results might make them eligible for some clinical trials.
- 69% of women tested were told that having a BRCA mutation increased their risk for other cancers.
- 70% were told that having a BRCA mutation meant that their children have a 50% chance of having a mutation as well.
- 70% were told that they could inherit genetic mutations that increase ovarian cancer risk from either their mother or father.
- 54% were told that about 1 in 5 ovarian cancers can be linked to inherited mutations in a gene that increases cancer risk.
- Only 38% were told about the Genetic Information Nondiscrimination Act (GINA) laws that prohibit genetic discrimination by health plans and employers.
Do women feel that they were given enough information to make a decision about genetic testing?
Women who had genetic counseling were more likely to feel as though they had received enough information to make their decision about testing regardless of whether or not they ended up having testing.
Among women who didn’t have genetic testing, those who felt like they were given enough information about testing were more likely to be satisfied with their decision than those that felt they were not given enough information.
What type of information would influence women who did not know about genetic testing to undergo testing in the future?
Most women (87%) had heard about genetic testing before taking our survey. Of the 182 women who had not previously heard about genetic testing, at least 75% said that the following pieces of information would influence them to speak to their health care providers about genetic testing:
- All women diagnosed with ovarian cancer meet national guidelines for genetic testing – 82%
- Knowing if you have a mutation in BRCA or other gene associated with cancer risk can affect your treatment decisions – 85%
- Knowing if you have a mutation in BRCA or other gene associated with cancer risk can make you eligible for some clinical trials – 84%
- There is a new targeted therapy for ovarian cancer patients who have mutations in BRCA – 84%
- If you have a mutation in BRCA you are at increased risk for other cancers – 87%
- If you have a mutation in BRCA, your children have a 50% chance of having a mutation as well – 77%
- You can inherit genetic mutations that increase ovarian cancer risk from either your mother or father – 82%
Access to up-to-date information is essential for informed health care decision-making. Yet many women diagnosed with ovarian cancer are not given all the information that they need to make informed decisions about genetic counseling and testing.
In general, access to information about genetics seems to be increasing as more is learned about the link between ovarian cancer and mutations in BRCA1, BRCA2, and other genes. It is not surprising that the more informed women are about genetic testing, the more satisfied they are with their decision. Further, it makes sense that genetic counseling was associated with women feeling more informed about the genetic testing decision. FORCE recommends genetic counseling for any person concerned about the cancer in their family and anyone considering genetic testing.
Still, we need to address gaps in information being shared with women with ovarian cancer about genetic testing. There is a need for more information about targeted therapy, clinical trials, and the Genetic Information Nondiscrimination Act (GINA). GINA protects people with inherited risk from discrimination in employment and health insurance.
KNOW MORE addresses these gaps, providing ovarian cancer survivors with information and support through our free Peer Navigator Program.
Tags: brca, BRCA 1, BRCA 2, brca testing, BRCA2, gene testing, Genetic counseling, genetics, HBOC, hereditary cancer, hereditary cancer research, ovarian cancer, survivor