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Results from the KNOW MORE Ovarian Cancer Survey: Your Comments

November 17, 2016

by Sue Friedman

Screen Shot 2016-03-17 at 8.49.49 AMFORCE’s KNOW MORE campaign helps women diagnosed with ovarian, fallopian tube, or primary peritoneal cancers make informed decisions about genetic counseling and testing for inherited gene mutations. We launched a survey, which was completed by over 1,600 women with ovarian cancer. This blog continues our series on the survey results.

We received over 600 comments from our respondents, which provided us with a deeper insight into the experiences of women facing hereditary ovarian cancer.

Most of the respondents were satisfied with their decision about genetic testing, whether they decided to undergo genetic testing or not.. As previously reported, those who had received genetic counseling were more likely to be satisfied with their decision than those who did not.

However, some of the comments we received are concerning because they show that some women did not receive the balanced information they needed from their health care team. One of the most frequent comments we heard was surrounding the cost of genetic testing.

My doctor never suggested testing, he said it was too expensive.”

It’s important to note that the cost of genetic testing has gone down in the last several years and for women with ovarian cancer, it is typically covered by insurance.

Other women were told that they needed a family history of cancer in order to qualify for genetic testing.

“I never thought of having genetic testing due to the fact that only one other family member has had a cancer diagnosis.”

In fact, national guidelines recommend genetic evaluation for every woman diagnosed with ovarian, fallopian tube, or primary peritoneal cancer. No other family history of cancer is necessary.

Others just did not receive enough information.

“Testing was not offered to me nor was it even discussed.”

“My primary doctor suggested — but I truthfully did not understand the process, and at that time, did not think it was necessary. I now wish I had agreed to be tested.”

“I am glad I had the testing, but was not given any support or information about the pros and cons of testing.”

National guidelines recommend that people see an expert known as a genetic counselor before and after genetic testing. These experts will make sure that people concerned about hereditary cancer have the information that they need about genetic testing, treatment and prevention options, legal protections, insurance coverage, and information that they can share with their relatives to help them make decisions about genetic testing.

Testing experience:

Many women expressed that genetic testing helped them make decisions about their treatment or participation in a clinical trial. Lynparza is a PARP inhibitor drug approved by the FDA to treat ovarian, fallopian tube, and primary peritoneal cancer in women who carry a BRCA mutation, and who have received three or more previous lines of chemotherapy. There are several clinical trials looking at new agents like PARP inhibitors for treating hereditary ovarian cancer.

“I had both breast and ovarian before I even knew about the test. Testing helped me make medical decisions, including enrolling in a clinical trial which has been successful since 2008. My doctor ordered the test during treatment for my third recurrence because basic treatments were not working.”

Others indicated that they wished that testing had been available to them earlier.

“I would have done this much earlier if insurance/funds had been available. I am at the beginning of my treatment: ports, scans today, and my 1st chemo next week. If it had been available to me 30 years ago, I could have made more informed choices and possibly avoided this.”

“When I was first diagnosed in 2005, I was not deemed a high enough risk for BRCA to have the counseling and test covered by insurance. I’m very happy it’s now covered for all ovarian cancer patients.” 

Benefits for family:

Genetic testing in women with ovarian cancer can help their relatives make decisions about their health. When women with ovarian cancer test positive for a genetic mutation, their blood relatives have a chance of carrying the same mutation. Experts recommend that relatives of women with mutations undergo genetic counseling and testing to understand their cancer risks. There are options for women and men who test positive for an inherited mutation to lower their risk for cancer or detect it early.

Many women commented on how their testing affected their relatives.

“One daughter has an appointment to be tested and the other daughter came back negative. My older sister is not in favor of testing but my younger sister is sort of thinking about having testing done.”  

“Since there is no history of cancer on either side of my family I was surprised to have BRCA1 mutation. My daughter has it and one of my sister’s also have it. One of my sister’s is resisting the testing, which worries me because she has a daughter in college.”

“I needed better information that is less technical, confusing, and scary to provide family members about my genetic testing results”.

How women with ovarian cancer can learn more

FORCE has several resources for ovarian cancer survivors and their family who are considering genetic testing including:

  • FORCE “Should I Get Genetic Testing” page compiles our most requested resources on genetic counseling and testing.
  • FORCE Peer Navigation Program provides free expert-reviewed resources and 1:1 peer support for people with hereditary cancer or increased risk who need support or information for making health care decision.
  • The 10th Annual Joining FORCEs Against Hereditary Cancer Conference where you can hear directly from medical and scientific experts, learn about clinical trials, and meet others and share experiences about hereditary cancer.
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