DNA research icon

This blog post is from our My Ovacome forum and was originally written in November 2020.

In this post, we’ll look at the different situations in which people may seek genetic testing and how they can access it.

If you think that you may have inherited a mutation that increases the risk of ovarian cancer, you may be able to have genetic testing to find out. Some people want to know about any mutations so that they can be well informed and consider their options. Others prefer not to know because of the anxiety that the knowledge could cause them. If members of the same family have different views on this, it can be a complex situation to navigate.

If you have been diagnosed with ovarian cancer and started treatment, genetic testing and counselling may be available through your hospital. Whether or not you have a BRCA mutation affects your treatment options, as the PARP inhibitor olaparib is currently only available first line to people with one of these mutations. We provided an overview of availability of PARP inhibitors in a previous post here. 

If you’ve been diagnosed with ovarian cancer and are considering private genetic testing, it’s important to first discuss with your team whether the results are likely to affect the treatment options available to you. Although there are some tests available privately that aim to identify the drugs that would be most effective for an individual on the basis of the mutations that they carry, the research into this kind of personalised treatment is currently at a very early stage. It may therefore not be helpful to have further testing, unless your team advises you otherwise. Research is being done to develop this type of individualised treatment, so more options may be available in the future.

If you’re considering genetic testing because a relative has tested positive for a mutation or because of a history of cancer in your family, the first step would be to speak to your GP. Ovarian Cancer Action also have a risk tool on their website that you can use as a guide to your own level of risk, which you can find here. 

If your GP thinks that you may meet the criteria for genetic testing on the NHS, they will refer you to a specialist genetics clinic. You’ll see a genetic counsellor first to go through your family history in more detail and, if you are eligible, to discuss testing. This is to help you understand the possible results of the tests and what they could mean for you and also for other members of the family.

If you’re eligible for the test and, after counselling, decide to be tested, you will have a blood sample taken. If you’re being tested because a relative has tested positive for a mutation, the results usually take about two weeks. If you’re being tested because of a family history but no one else in the family has been tested, the results will take longer (4-8 weeks or possibly more) because the laboratory don’t know which mutation they’re looking for. You can read about the testing process in more detail here, if you’re not eligible for NHS genetic testing for mutations that could increase your risk of cancer and want to be tested, it is possible to use a private provider. You can find more information about this at Genetic testing for cancer risk | Cancer Research UK. If you do decide to have private genetic testing, it’s important to make sure that you understand which genes are being tested for and that genetic counselling is included in the price. If you’ve been found to have a genetic mutation, some of your family members may also have inherited the mutation. It doesn’t mean that they will definitely develop cancers, and they will need to decide whether they want to be tested for the mutation or explore other options such as available screening.

This guide to BRCA mutations from the Royal Marsden NHS Foundation Trust includes information from page 17 onwards about talking to family members and their options: Beginners Guide to BRCA1 BRCA2. Although it focuses on BRCA mutations, much of the information about what the results mean for family members will be relevant to other mutations as well.

For those who have inherited one of the BRCA or Lynch syndrome mutations, or if family history strongly suggests that risk is increased, it may be possible to have risk-reducing surgery, for example to remove ovaries and fallopian tubes. It may also be possible to have monitoring by regular CA125 tests or ultrasound scans. There is no nationwide screening programme for ovarian cancer, but there may be monitoring available as part of a research study.

There are also lifestyle changes which can support general health and reduce the risk of cancer, such as maintaining a healthy weight and not smoking. There is more information on reducing ovarian cancer risk at What are my options for cancer prevention? | Ovarian Cancer Action.

As we mentioned above, inheriting a mutation doesn’t mean someone will definitely get cancer. Without a mutation, the level of risk is the same as the general population.

If you would like to share your experiences of genetic testing, please comment on this post. If you would like information or support, please contact our Support Line on 0800 008 7054 or email [email protected]