
"I am glad that taking part in a trial might help others on their own cancer journey.”
This study looked at whether people find it acceptable to have a test for inherited gene changes after they have been diagnosed with ovarian cancer.
There are several factors that increase someone’s risk of developing ovarian cancer. One of the risk factors is inheriting a gene with a genetic change (mutation).
An inherited genetic change means one that is passed on from parent to child. Inheriting a genetic change doesn’t mean that someone will develop cancer, but it does increase the risk that they will.
When this study was done, women were usually only offered genetic testing if they had a strong family history of ovarian cancer or breast cancer, or both. But women without a strong family history may have also inherited a genetic change.
In this study, researchers looked for inherited genetic changes in people who had already been diagnosed with ovarian cancer. When people have an inherited genetic change, it means their relatives are at risk of having it too. And therefore have a higher risk than normal of developing cancer.
Knowing this would mean that relatives could have genetic counselling and be tested themselves if they wanted to be. And maybe have screening to help diagnose cancer early so that it could be treated successfully.
Women who had been diagnosed with these cancers within the previous year could join the study:
The aim of this pilot study was to see whether:
The team concluded that people recently diagnosed with ovarian cancer found it acceptable to be tested for an inherited genetic change.
This study was open for people to join between 2013 and 2015, and the team published the results in 2016.
About this study
Everyone taking part in this study had been diagnosed with ovarian cancer.
They all gave a sample of blood or spit (saliva), so that the study team could look for inherited gene changes.
They also completed questionnaires asking them how having the test had affected their mental health and wellbeing.
The research team then interviewed 12 patients and 5 health care professionals to find out more about what they thought about the process.
Results
232 people aged between 28 and 90 joined this study. They had all been diagnosed with ovarian cancer, and had tests to identify inherited genetic changes.
The research team found that 18 people (8%) had a genetic change:
And when they looked at women aged less than 70 who also had a family history of cancer, they found that 13 out 77 (17%) had a genetic change.
The research team found that people generally thought it was ok to have the test at that time. The results showed that it was the diagnosis of cancer that affected their levels of distress. Having the genetic test did not tend to make this worse.
Cost analysis results
The research team compared the cost of testing all women who’d been diagnosed with ovarian cancer with only testing women who had a family history.
They found that the cost per person was lower if everyone who’d been diagnosed was tested. This is partly because there is less admin involved in assessing and identifying people to test.
But the overall cost would be higher, because more people would have the test.
The research team felt that it could be an option to test women less than 70 years old who’d been diagnosed with cancer. This is because so few women aged 70 or more with ovarian cancer had a genetic change.
Interview results
The research team interviewed 12 patients and 5 members of staff. The interviews lasted between 25 and 90 minutes.
The results showed that having a genetic test was not a great concern to the women, compared to being diagnosed with cancer. But the results could affect their relatives.
Some of the points raised about the test and test results included:
And there were some points about the timing of the test:
Conclusion
The research team concluded that women with ovarian cancer found being tested for an inherited genetic change acceptable. And that it didn’t increase distress more than being diagnosed with cancer.
They found it could be more cost effective to test women aged less than 70 who’d been diagnosed with ovarian cancer.
Where this information comes from
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed) and published in a medical journal. The figures we quote above were provided by the study team who did the research. We have not analysed the data ourselves.
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Dr Marc Tischkowitz
Cambridge University Hospitals NHS Foundation Trust
NIHR Clinical Research Network: Cancer
Target Ovarian Cancer
If you have questions about the trial please contact our cancer information nurses
Freephone 0808 800 4040
"I am glad that taking part in a trial might help others on their own cancer journey.”