- How might I feel?
- What is the impact on my treatment and my risk of other cancers?
- What is the impact on my family members?
- How do I tell them and how might they feel?
If you’ve been told there is a known mutation present, you will be told whether you have a mutation in your BRCA1 or BRCA2 gene. The result will have an impact of your risk of developing other cancers, the risk of your family members developing cancer, and it may also have implications for your treatment. You will receive additional counselling to explain the impact of this result.
“I was very stunned. After I’d completed the family history form I’d been told I was at a very low risk of having the gene mutation so didn’t have any counselling about what the impact of a positive test would be.” Shani
“The genetic counsellors were brilliant and very sensitive in the way they approached it. They offered further support and counselling.” Berni
Naturally people can have very different feelings and reactions when they find out they have a gene mutation that explains their cancer diagnosis. Initially many women feel shock, anger or anxiety. Some people expect to have a gene mutation and are glad to have an explanation for the cancers in their family.
“It adds another dimension to the journey, just when you think you’re through it and can get off the wheel; finding out about BRCA throws you off kilter. It’s the hardest part to deal with because you know cancer is not going away.” Berni
“I feel like I’ve been diagnosed all over again, which sounds dramatic, but I was really shocked. I got over this shock by reassuring myself that at least my children would know about their risk.” Shani
“If I’m honest, knowing I have a faulty gene has given me a sense of relief because it helped explain why I was unlucky to get cancer twice. But then I realised the implications for my family.” Adele
With time, most women adjust to this new information. Additionally, many are pleased that although it does not change their own diagnosis, there is important information available for other family members.
“My sister pointed out that now she can be monitored and will not have to go through the same as me.” Berni
It is important for women to remember that they cannot control the genes they inherit from their parents or the ones they pass on to their children.
“I felt a bit guilty that I could have passed this on to my children, but you can’t choose what genes you pass on.” Shani
You will have the option of a follow up appointment with your local Clinical Genetics Service to further discuss how you are feeling and the impact the result can have on you and your family. They will be able to provide you with further information and direct you to where you can access further support.
For women with ovarian cancer who have a mutation in the BRCA1 or BRCA2 genes, the risk of developing breast cancer is also increased. For a woman in the general population the lifetime risk of developing breast cancer is about 12 per cent (one in eight). If she has a BRCA1 or BRCA2 mutation, the risk is around 50 to 80 per cent. Remember, an increased risk does not mean you definitely will develop breast cancer. There are a number of risk management options which we talk more about later in the guide.
There is ongoing research into new treatment options for women with ovarian cancer who carry known mutations in the BRCA1 or BRCA2 gene. Studies indicate that the prognosis for BRCA1 or BRCA2 carriers can be better than for those with no gene mutation because carriers have an increased responsiveness to specific therapies. We talk more about the impact having a BRCA1 or BRCA2 gene mutation has on your treatment here.
Having a mutation in your BRCA1 or BRCA2 genes may also have important health and social implications for family members, including future generations. If you have been found to have a gene mutation, genetic testing (known as predictive testing) will be available to adult members of your family who wish to know whether or not they have inherited the gene mutation.
Your siblings will have a 50 per cent chance of also carrying the BRCA gene mutation and will be able to access predictive testing.
Your children will also have a 50 per cent chance of inheriting the BRCA 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 is important that they make their own informed choice about whether to be tested.
The mutation in your BRCA1 or BRCA2 gene will have been inherited from your mother or father. If they are unaware of their BRCA status, they can access advice about testing, as can their siblings, nieces and nephews (your aunts, uncles and cousins).
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
If your relatives are aware that you are having genetic testing, a conversation about the results may arise naturally. Depending on how you are 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. 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 are able to have a predictive genetic test that can allow them to take action if they are 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 additional screening and/or surgical options that are available. However, knowledge about a possible increased cancer risk may cause anxiety for relatives and some people are concerned about the possible impact on their work or insurance. There is more information about this here.
“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 are 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. People are all different and some adjust to the news more quickly than others. You will 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
Find out more
- I have a BRCA1 or BRCA2 gene mutation – what now?
- What are the implications for a family member with a BRCA gene mutation?
- Further sources of support
The information on this page is approved by the Information Standard scheme to ensure that it provides accurate and high-quality information.
Last reviewed: July 2016
Next review: June 2019