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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.

As guidance on genetic testing is relatively new, in some areas of the UK testing may not be automatically offered. If you haven’t been offered a test, you may still be able to ask for a referral to a genetics centre via your GP or oncologist.

Find your nearest genetics centre

You will then be offered the chance to speak with a genetic counsellor to help you make a decision about whether to have the test or not, and what the implications would be for you and your family members.

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.

Catherine in BirminghamConsiderations 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). What is recommended for you in terms of addressing this risk will be discussed in the context of your current cancer diagnosis and treatment.

Read more about the implications of the BRCA1 and BRCA2 gene mutations

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 side of the family the mutation is passed down through. 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.

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.

Read more about discussing your results with your familyAdele and Zindzi

Due to the potential implications, it can be very helpful to discuss genetic testing with your relatives at an early stage. If you are seen by your local Clinical Genetics Service prior to deciding about genetic testing, they will cover 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. If you feel that it is not the right time to have genetic testing now, you may choose to revisit it at a later stage. Some women have DNA stored (from a blood sample) so that it is available for genetic testing at a later date.

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The information on this page is approved by the Information Standard scheme to ensure that it provides accurate and high-quality information.

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Last reviewed: July 2016
Next review: June 2019