Kate and Shani
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Posted by Target Ovarian Cancer on Monday 15 August 2016

Target Ovarian Cancer aims to help more women with ovarian cancer access information on their familial risk with a brand new guide on genetic testing and hereditary ovarian cancer, out today.

Around 7,100 women are diagnosed with ovarian cancer every year in the UK, and 15-20 per cent of these diagnoses will be caused by genetic mutations such as those in the BRCA genes, which Angelina Jolie is known to have tested positive for. Having a mutation in the BRCA1 or BRCA2 genes can increase a person’s likelihood of getting ovarian and breast cancer.

New guidelines were published in November 2015 indicating that all women diagnosed with non-mucinous ovarian cancer in the UK, irrespective of family history, should be offered testing for mutations in their BRCA1 and BRCA2 genes. Over 90 per cent of ovarian cancers diagnosed are non-mucinous.

Low awareness of the new guidelines means that access to genetic counselling and testing varies across the UK, and this needs to improve.

The new guide, Genetic testing and hereditary ovarian cancer, which is also accessible online, is a vital source of advice for people who have had a diagnosis of ovarian cancer and their family and friends.

It will be of particular importance to women from an Ashkenazi Jewish background, as they are ten times more likely to have a mutation in their BRCA1 or 2 genes, and so are at greater risk of developing breast and ovarian cancer.

ShaniShani Stanley was diagnosed with ovarian cancer in 2014, but found out about the link between the BRCA genes and ovarian cancer the first time over a year later. In 2015 she underwent genetic testing and discovered she had a mutation in her BRCA2 gene. Shani’s daughter Kate was also tested and found she had the mutation. Shani has nine grandchildren. Shani said: “I really had no idea about the BRCA gene or the familial risk of ovarian cancer. I only found out after attending one of Target Ovarian Cancer’s Being Together days. I have three children and nine grandchildren, and they were a big factor in my decision to ask for genetic testing. There wasn’t really a large history of cancer in my family, but because I had ovarian cancer I was able to get the test.

“Ten weeks later I got a phone call to tell me I’d tested positive for a mutation in the BRCA2 gene – I was stunned. We later found out that my daughter has the mutation too. We’re now talking about preventative measures for her to make sure she doesn’t have to go through an experience like mine.”

Annwen Jones, Chief Executive of Target Ovarian Cancer, said: “With such a high number of ovarian cancers caused by genetic mutations, it is vital that women who have already been diagnosed with ovarian cancer can access support and find out more about hereditary ovarian cancer. Women who have been diagnosed with ovarian cancer have for a long time faced a lack of information on the BRCA gene and the implications of genetic testing. I’m pleased that Target Ovarian Cancer is launching this vital guide which aims to throw some light on a subject that has been in the dark for too long, and can have a positive knock-on effect on a woman’s health and that of their family.”

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