Talking about inherited cancer risk

Children in families with a gene mutation that can cause cancer in childhood or teenage years are offered genetic testing at an early age. This is so they can have screening or treatments to prevent cancer if needed.

But most inherited cancer genes do not increase the risk of cancer until adulthood. Usually, children in families with these types of cancer gene wait until they are older to think about genetic testing. This can make it harder for parents to decide when to tell them there is an inherited cancer gene in the family.

There are no rules about this. Every family is different. You know your child best and understand what is right for them. In general, parents say they think about their child’s age, maturity and emotional state.

Some parents tell their child soon after finding out their family is affected. Other parents wait because they feel their child is too young, or it is not the right time because there are other things happening.

Here are some reasons parents give for telling a child:

  • They want to be honest and open.
  • They worry the child will find out by chance, for example by overhearing conversations.
  • They want to help the child understand why a parent is having risk-reducing treatment or screening tests.
  • They want to help the child understand and talk about cancer in the family. This can involve answering their questions and anything they do not understand.
  • They want to help the child understand how this may affect them in the future.

Preparing to talk to children

Before you talk to your child, you may want to give yourself time to adjust to the news first. You may also want to decide whether you want to talk to your child alone or with someone else.

What to tell children

Think about what you want your child to understand and what you think they can cope with. The following tips may help:

  • Younger children only need a small amount of information. They often understand things slowly over time.
  • Teenagers usually want to know more and ask more questions.
  • Use language and words your child can understand. But try to use the correct words when you need to. For example, saying ‘boob job’ for mastectomy may seem less worrying. But it can also mean a child does not understand the seriousness of the operation.
  • Talking to your child during an everyday activity, such as a walk, may help them feel more relaxed.
  • Ask your child to tell you what they understand. If they have not understood something, you can explain again.
  • Ask them how they feel and talk about how you feel.
  • Ask them if they have questions.

Try to include positive messages when you talk with your child. You may find the following information useful:

  • Having a gene mutation does not mean you have cancer or that you will definitely get cancer.
  • Knowing you have the gene mutation gives you choices, like having screening tests or treatments. This can help reduce your risk.
  • Your child may not have the gene mutation, but they can find out when they are ready.
  • When your child is older, there may be even better treatments available.

Answering questions

It is important that your child feels you are okay to answer questions. You can help by encouraging them to ask. Reassure them that you are happy to talk about it again. Let them know they can ask questions any time.

It is easy to give too much information. Always check what your child wants to know. Ask them ‘What makes you ask that question?’ before trying to answer.

Many children and young people do not ask questions because they are worried about upsetting their parents. Some may find it easier to write their questions instead of asking you face to face. There may also be another person you both trust who they can talk to.

Your genetics specialist can give you more information about talking to children and teenagers about your genetic test results.