What should I do if I think I have hereditary ovarian cancer?
If you have been diagnosed with ovarian cancer and not offered genetic testing, arrange to talk with your oncologist and discuss whether you may be eligible. There may be reasons why genetic testing might not be appropriate for you and your team can discuss this with you. If you haven’t been offered a test and you are still wondering whether genetic testing might be right for you, you may still be able to ask for a referral to a genetics centre via your GP or oncologist.
You will then be offered the chance to speak with a genetic counsellor (a professional who is trained to talk to you about the risks and benefits of genetic testing) to help you make a decision about whether or not to have the test, and what the effects would be for you and your family members based on your choice.
What should I consider before having a genetic test?
There are some important things to think about before going ahead with genetic testing; in particular you should think about the impact of the testing on yourself and on those who are close to you. It’s important that you have a chance to discuss all your concerns and uncertainties about genetic testing before you decide whether or not to have the test.
In many places genetic testing is done by the same team and in the same place as your ovarian cancer treatment (the oncology clinic) so you won’t be referred to a genetics centre. This is called mainstreaming and it means that genetic testing can happen faster than if you had to go elsewhere. Your medical team should give you written information about genetic testing and you should have the chance to ask them any questions that you might have. It’s important to tell your team if you still have unanswered questions or if there is anything you are not sure about after your discussion with them. In this situation it might be helpful for you to be referred to a genetics centre so that you can speak to a genetics counsellor before deciding whether to have genetic testing.
Considerations for me
Some women find it helpful to have an explanation for why they developed ovarian cancer. However, there will be other implications for you if you are identified as having a hereditary cancer risk as you will have an increased risk of developing other cancers. In the case of the BRCA1 or BRCA2 genes you will have a higher risk of developing breast cancer (in comparison to the general population). Your options for managing this risk will depend on your current cancer diagnosis and treatment. The results of genetic testing may also have implications for your ovarian cancer treatment.
Considerations for my family
A second consideration is the impact on your family. Other members of your family may also have the gene mutation if you do; including your mother or father, siblings and your aunts, uncles and cousins, depending on which side of the family the mutation is passed down. The children of someone with a BRCA1 or BRCA2 gene mutation have a 50 per cent (one in two) chance of having inherited it and therefore being at increased risk. They also have a 50 per cent (one in two) chance of having inherited a normal copy of the gene from the parent with the gene mutation. In that case, they would not have an increased risk of cancer due to a gene mutation.
Women with a BRCA1 or BRCA2 gene mutation have a high risk of developing breast and ovarian cancer and men may have an increased risk of developing prostate cancer and male breast cancer. There may also be a small increased risk of pancreatic cancer for men and women who carry BRCA2 gene mutations.
Due to the potential implications, it can be very helpful to discuss genetic testing with your relatives at an early stage. If you have contact with your local genetics centre prior to deciding about genetics testing, they will talk about these issues with you in more detail.
When should I have genetic testing?
If you are eligible for a genetic test, it is important to ask yourself “When is the right time for me to have genetic testing?” There is evidence that having genetic testing soon after a cancer diagnosis can be more distressing. But having genetic testing early also means that people with a gene mutation can receive treatment such as PARP inhibitors (a group of drugs that work by stopping cancer cells repairing themselves) at an earlier stage.
If you feel that now is not the right time to have genetic testing, you may choose to think about it again at a later stage. Some women have DNA stored (from a blood sample) so that it is available for genetic testing in the future.
Find out more
- What is a genetic test and what are the possible results?
- What is the impact of the different results for me and my family?
- I have a BRCA1 or BRCA2 gene mutation – what now?
- What are the implications for a family member with a BRCA gene mutation?
- Further sources of support
The information on these page is reviewed regularly and is in line with accepted national and international guidelines. All of our publications undergo an expert peer review and are reviewed by women with ovarian cancer to ensure that we provide accurate and high-quality information. To find out more take a look at our information standards.
Last reviewed: March 2020
Next review: April 2022