Telling family members about a positive test result

How to tell your family that you've discovered you have a 'mutation present' and what this might mean for them.

If your test shows that you have a BRCA1 or BRCA2 gene mutation ('mutation present') it's possible that your relatives will also have a BRCA1 or BRCA2 mutation.

Adult members of your family can choose to have a genetic test to find out if they have inherited the same mutated gene. This is called 'predictive testing' because a positive result ('mutation present') for them means they have an increased risk of developing cancer. It doesn't mean they have cancer or are definitely going to develop it.

More about the implications for family members who have a mutation present

The mutation in your BRCA1 or BRCA2 gene will have been inherited from your mother or father. If they're unaware of their BRCA1 or BRCA2 status, they can access advice about testing, as can their siblings, nieces and nephews (your aunts, uncles and cousins).

Your siblings will have a 50 per cent chance of also carrying the BRCA1 or BRCA2 gene mutation and will be able to access predictive testing.

Your children will also have a 50 per cent chance of inheriting the BRCA1 or BRCA2 gene mutation. Testing is only available to adults over the age of 18 because the risk management options are either not available or not yet necessary for those under 18 and it's important that they make their own informed choice about whether to be tested.  

It's important to note that both men and women who inherit a BRCA1 or BRCA2 mutation, whether or not they develop cancer themselves, may pass the mutation on to their sons and daughters.

Remember, not all individuals with a BRCA mutation will develop cancer. 

My mum had never had cancer, and wasn't aware of BRCA until I got ovarian cancer and was tested. She subsequently also tested positive and at the age of 75 was diagnosed with breast cancer – caught and treated very early because she was put on a screening programme because of her BRCA status.

Sharon

How do I tell them and how might they feel?

If your relatives are aware that you're having genetic testing, a conversation about the results may arise naturally. Depending on how you're feeling (physically and emotionally) it can feel like a difficult discussion to have. It can be particularly challenging if there are young family members you want to share the information with: we know that some women struggle with the thought of potentially passing on a gene mutation to their children.

All of these feelings are completely normal so please remember you are not alone. Some women find that confiding in their partner or a friend can be beneficial. Your local clinical genetics service is also available to provide support.

In many cases women find that their relatives are wondering whether they may have an increased cancer risk and are very accepting of the news about a gene mutation. It means they're able to have a predictive genetic test that can allow them to take action if they're at increased risk. 

Many people choose to have predictive genetic testing because they would rather be aware of an increased risk of cancer and take up the chance to have regular tests or even surgery (a risk-reducing operation). However, knowing about a possible increased cancer risk may cause anxiety for relatives. Some people are concerned about the possible impact on their work and insurance. There's more information about this in our Genetic testing guide [PDF].

Some people are worried about the impact a possible increased cancer risk might have on future relationships and having children of their own. There's no right or wrong way to feel and there is help and support available, including from your local clinical genetics service.

I was really worried for my children, but relieved to know they can be tested and be alert for the signs. I was open with my family the whole way through about what it might mean for them.

Shani

When I was first diagnosed as a BRCA gene carrier, I wanted my daughter tested straight away, but was counselled against it as she was only 13. They said she should be at least 18 and should be fully aware of the implications of the possible results.

Adele

Some women find they have relatives who are resistant to genetic testing and who prefer not to receive the information. Some have relatives they're not in contact with. These situations are challenging and may be distressing. Your local clinical genetics service will be able to discuss this with you. If you think it will be helpful, they can provide an 'open letter' that you can send to relatives that explains about the gene mutation and the genetic testing available to them.

I was given a letter by my genetic service to share with my brothers and children explaining the gene and about being tested.

Shani

Ultimately, whether and when your relatives decide to have predictive genetic testing is up to them. All people are different and some adjust to the news more quickly than others. You'll have given them an option that may not otherwise have been available to them.

All my family are aware, and some have already been tested. My three daughters have had very different reactions. One is finding it difficult to cope with cancer deaths in the family and then my subsequent diagnosis, but says she will get round to getting tested. One does not want to be tested, and did not even want to know the result of my test, but I felt it was important she had all the information. One has been tested and also carries the BRCA1 mutation, and says her team have been fantastic. She's been offered counselling and will be talking to them about preventative measures soon. My eldest sister is reluctant to be tested – she says she 'hasn't gotten around to it yet'.

Berni

 


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: March 2020
Next review: April 2022