This page provides information for those who have a family member diagnosed with ovarian cancer, who want to know more about genetic testing and inherited risk.

Around 15 to 17 per cent of ovarian cancer cases are thought to be linked to BRCA gene changes so although many families affected by the disease are looking for information on genetic testing, most cases are not caused by a hereditary gene change.

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Can I have a genetic test to see if I will develop ovarian cancer too?

If you have a first degree relative (parent, sibling, child) who has had a genetic test and found out they carry a BRCA gene fault, you are eligible for genetic testing yourself, should you wish. Your relative should be able to provide you with a letter detailing this result for you to take to your GP. You can then ask for a referral to your local genetics team. You will go through a process called genetic counselling to understand the test, what it could mean for you and the decisions you might need to make afterwards. Whether to have the test at the end of this process is totally your decision.

If your relative had a BRCA test and it was negative, this means you cannot inherit a BRCA gene change from them.

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My relative has not had a genetic test to find out if they carry a BRCA gene change.
If your relative did not have a genetic test, chose not to have one or died before having a test, you will need to look at your family history of cancer and discuss this with your GP. If you have a significant family history of cancer, genetics teams still prefer to test a family member with cancer before offering testing to others in the family. Sometimes it is possible to test tissue samples of someone who has died in order to do this.

If you are concerned about your risk, you can discuss your family history of ovarian, breast and other cancers with your GP and ask to be referred to a cancer genetic centre.  The national guidelines on who can access genetic testing can be complicated. Generally testing isn’t usually offered unless you have two or more family members affected by the cancers linked to BRCA gene changes. You can use Ovarian Cancer Action’s Hereditary Risk Tool to assess whether your family history of cancer might make you eligible for genetic testing on the NHS.

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How is the testing done?
BRCA testing is a complex process. The BRCA1 and BRCA2 genes are very long. Changes can occur at any point along the length and different families have different gene variations, so looking for a gene change is a bit like looking for one long digit in a whole phone book The first step is usually to take a blood sample from a family member with ovarian or breast cancer and identify the fault from that sample. If a gene change is found, genetic testing can then be offered to other family members if they want to know whether they have inherited the gene change.

Of course, you do not have to take up the offer of a genetic test. Some people may simply not wish to know but it is worth spending time talking about your options with a genetic counsellor before you make your decision.

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What are the options if I am found to have a gene change?

The decisions that you make if you have inherited a BRCA gene change will depend on your age and circumstances.  Those with a BRCA gene change may be offered surgery to remove their ovaries and fallopian tubes, to reduce the risk of ovarian cancer. This is called a bilateral salpingo-oophorectomy.  If you were planning to have children it may change your ideas on when, so that you can time risk-reducing surgery to fit your needs. Another consideration is that this risk-reducing surgery will put you into immediate menopause, which has health implications, so it is important to discuss your options in detail with your genetic counsellor.

You may instead choose to look out for signs and symptoms of ovarian cancer and report these to your GP if they occur, along with your family history and genetic information. There is more information in our booklet here. It’s important to be aware however that there is not currently any screening programme available for ovarian cancer and the recommendation is for BRCA gene carriers to have risk-reducing surgery.

If you have a BRCA1 or BRCA2 gene change you are also at increased risk of breast cancer. You will be offered screening in the form of breast MRI and earlier mammography than the general population to pick up any early stage breast cancer.  You may choose to have risk-reducing surgery: a bilateral mastectomy to remove both breasts, to reduce the risk of breast cancer. Many women have reconstruction of their breasts at the same time as this surgery but this is a personal choice to discuss with your medical team.

If you are male who has inherited a BRCA2 gene change, your risk of prostate and breast cancer is significantly increased. Research is ongoing into how effective screening is for prostate cancer in men with a BRCA2 change, but you can speak to your local team about getting involved in research trials. Men with BRCA2 gene changes are also advised to practice regular breast examinations and speak to their GP if they notice any changes.

You can read more about your options for screening and cancer risk reduction here.

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What if I have not inherited the gene change?

If one of your family members tests positive for a BRCA gene change, but you do not, then your chance of developing ovarian or breast cancer is not significantly higher than anyone else your age in the population, and therefore you are not eligible for earlier breast screening. You will still be encouraged to join the National Breast Screening Programme when you are 50.

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My parent has ovarian cancer, but there’s no other cancer in my family, should I be screened?

If your parent is the only person in the close family who has developed ovarian cancer, then your risk of ovarian cancer is only slightly increased. There is currently no national screening programme for ovarian cancer available on the NHS.

However, your parent may themselves be eligible for genetic testing and this may give the family information that impacts your own risk.

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Watch Genetic testing, an Ovacome webinar with Dr Terri McVeigh, Consultant Clinical Geneticist at The Royal Marsden NHS Trust

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You can find more information about BRCA gene changes, their risks and testing for them at:

A beginner's guide to BRCA1 and BRCA2

Predictive genetic tests for cancer risk genes - NHS

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].