Talking To Your Family

Talking to children about BRCA

You may feel overwhelmed, very emotional, or even guilty thinking about if and how to tell your children about the BRCA gene in your family. It is natural to feel that your children will be upset knowing about your increased risk of cancer and their own possible increased risk. Risk-reducing treatment may also interrupt family life. For example, if you need to go to hospital for surgery and take time to recover.

Should I tell my children?

You know your children best. Many professionals do advise talking to children - at a level that they can understand (very simple explanations for younger children, more detailed talks for older children and teens). Some of the reasons for this are:

Children may notice that something has changed or feels different but not understand what is happening. They may make up their own explanations about what is happening or blame themselves. Living with uncertainty can be harder for children than knowing the truth.
It may be easier on you and your children if everything is out in the open. You can talk about what is happening rather than trying to keep secrets or make up excuses. Your children can come to you with questions or if they are feeling worried or upset.
Children may find out from someone else or by overhearing conversations. They may worry, imagine the situation is worse than it is or feel left out if this happens.

It may also help to know that research found that:

Most parents reported that their children were not concerned following the discussion of parent’s BRCA result.
Parents reported that typically they had not experienced upset or disruption in their relationships with their children.

Bradbury et al. 2012, Paternaude and Schneider 2017

[[Quoted in - PowerPoint Presentation (stgeorges.nhs.uk)]

Getting ready to talk to your children

You may need some time before you feel ready to talk to your children. You may still feel upset or worried about your genetic test result or unsure what it means for you or what the next steps will be.

It may be easier for you to talk to your children when you are over the initial shock / upset and when you are clearer about your own healthcare plan. You may also feel more comfortable if you are confident talking about some of the genetic and medical information. You may need some time to make sure you understand things, so you are ready to answer any questions.

When and where?

Think about what you are going to say in advance and try to prepare for possible questions.
Finds a comfortable environment where you won’t be interrupted.
Consider talking when you're doing something else together like walking, playing or driving. This can sometimes be easier.
Treat older children and teenagers separately to younger children in the family when discussing BRCA.
Allow plenty of time so that you are not interrupted or have to rush off without answering your child’s questions.
It may be best to talk early in the day, so that you can spend time together or talk again before bedtime.

How should I tell my children?

You could start the conversation by asking your child what they know about genes and inherited illness (depending on their age). Or you could mention something that has happened or is about to happen – Do you remember that I went to the doctor’s last week…?
Let your child know what has happened and what will happen next.
Use simple everyday words, suitable for the age of your child.
Listen carefully to what your child says. They will ask what they really want to know.
Use clear, truthful and repeated explanations. Say ‘I don’t know’ if you are unsure about anything.
Use books and activities, such as drawings, to help you explain about genes and cancer risk.
Encourage your child to talk to you whenever they want and give them every chance to express what they are feeling and thinking.
Be prepared to have more than one conversation. They may get confused if they get too much information, so break it up and keep it simple. They can always come back to you if there is something they want to know that wasn’t discussed. Or you can have another chat later. For example, you could tell them about your cancer risk in one conversation, talk about any treatment you might have in another and discuss your child’s risk in another. Depending on your child’s age, what you think they need to know and what you think is best for them, you may not want to talk about all subjects, or you may leave a long time between subjects.
Show and tell your child they are loved and cared for
Share your own feeling to help show children that it is okay to feel strong emotions.

Answering questions

Children can ask very direct questions – sometimes questions you do not have answers to. Allow yourself plenty of time to spend with your children afterwards. This gives them an opportunity to ask more questions and can also help to reassure them.
Children may not ask questions right away, so don't be surprised if they come back to you later. Children and teenagers will sometimes feel more comfortable asking difficult questions in a setting where they do not have to maintain eye contact, for example, when out for a walk or on a car journey.
If you don’t know the answer to a question, it’s OK to say so. For example, ‘I don’t know, but when I do I’ll tell you.’ ‘Next time I see the doctor I’ll ask her and then I’ll tell you.’

Talking to other family members

Telling people about your increased risk of cancer can be very difficult. It can be hard to find the words. You may also have feelings such as guilt, sadness or anxiety before or after the conversation.

Your genetic counsellor will give you advice about how to tell family members about your genetic test result. They can also give you a letter with information on your BRCA test results, which you can show to your family.

Support for conversations about BRCA

Talk to our cancer nurses
Take part in free counselling from the Irish Cancer Society
Join a support group. Call our Support Line for information on support near you.

Will I be able to get health insurance and life insurance?

You do not need to tell insurers about the results of any genetic tests you have had. You may need to tell insurers about past medical care. For example, surgeries. But you do not need to tell them that you are BRCA positive.