If you've had a diagnosis of ovarian cancer, it's a common reaction to wonder what caused it, or worry that other family members may be at risk.
Cancer is a common illness so it's not unusual to have more than one family member with the same type of cancer and/or different types of cancer within one family. However, some families may have a greater chance than normal of developing ovarian cancer.
Up to 20 per cent of cases of ovarian cancer occur because of a genetic cause – a mutation (alteration or change) in one or more genes known to increase the risk of ovarian cancer, which has been passed on from your mother or father. Some types of ovarian cancer (such as serous epithelial ovarian cancer) are more likely to be caused by a mutation in a gene than others (such as mucinous or germ cell ovarian cancer).
What is meant by hereditary ovarian cancer?
'Hereditary' means the passing on of specific characteristics in your DNA (genetic makeup) from one generation to another – in this case, passing on a mutation in a gene. The term 'familial' means something that occurs or tends to occur in families.
'Familial cancer' or 'hereditary cancer' is a cancer that has developed as a result of carrying a mutation in a gene.
Mutation? Fault? Spelling mistake? Alteration?
When a change occurs in an inherited gene it is called a mutation. You might hear it called a faulty or an altered gene elsewhere, but we refer to it as a 'mutation' or 'mutated gene'.
What should I consider if I have hereditary ovarian cancer?
There are a number of things to think about if you find out you have hereditary ovarian cancer. Firstly, there's the impact on you – it may have some implications for the treatment of your ovarian cancer. Over the last few years new drugs have been developed that target ovarian cancers specifically in women with a mutated BRCA1 or BRCA2 gene and you may be eligible for treatment with these drugs. Please speak to your oncologist about this.
Some hereditary ovarian cancers also increase your risk of developing other cancers, including breast cancer, and so you would need to consider ways to manage this increased risk.
There could be an impact on family members who may also have inherited the gene mutation, which could put them at increased risk of ovarian and breast cancer. Our Genetic testing guide [PDF] talks through these considerations and gives more information on each.
How do I know if I have hereditary ovarian cancer?
Women diagnosed with non-mucinous epithelial ovarian cancers, including high-grade serous ovarian cancer (the most common form of epithelial ovarian cancer) are often offered access to genetic testing for mutations in their BRCA1 and BRCA2 genes, even if they have no family history of ovarian cancer.
Over 90 per cent of ovarian cancers diagnosed are non-mucinous, which means that the majority of women diagnosed with ovarian cancer fit the criteria for genetic testing. This means that genetic testing could be available even if you don't know your family history.
Some women may not be eligible due to the specific type of cancer they have (for example germ cell or sex cord stromal tumours) but it's important all women discuss genetic testing with their clinician, oncologist (a doctor who specialises in cancer treatment) or genetic counsellor (a professional who is trained to talk to you about the risks and benefits of genetic testing) to find out if testing is appropriate.
I had no previous family history of cancer, on either side of my family, other than an uncle who died of a bowel cancer. I didn't even know about possible familial risk until I attended a Target Ovarian Cancer Being Together day, after a question was asked to the expert panel.
Mutations in genes such as BRCA1 and BRCA2 can occur in both women and men in any family so a gene mutation can be inherited from either your mother or your father. They are more common in some communities. For example, members of the Ashkenazi Jewish population are approximately 10 times more likely to have a mutated BRCA1 or BRCA2 gene, and so are more at risk of developing hereditary ovarian and/or breast cancer than people from the general population.
My family is from Ashkenazi Jewish background, and many of my aunts and cousins have had either cancer or preventative surgery. Despite this, it's still not widely talked about which contributes to lack of awareness of the gene.
I discovered I had the BRCA2 gene mutation almost by chance. I was young, fit and healthy when I was diagnosed with breast cancer. I questioned why but was told it was probably just bad luck. Eight years later, I was diagnosed with ovarian cancer. The consultants said there was probably genetic involvement and I received counselling about the BRCA gene. What came out when completing my family history form was that at least four members of my father's family had died of related cancers.
This information 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: February 2020
Next review: April 2022