Children do not usually get the types of cancer linked to Lynch syndrome until they are adults.
They usually will not have a genetic test until they are age 18 or older. They may be offered a genetic test sooner if there is a risk of childhood cancers.
Talking to children about Lynch syndrome
If you are diagnosed with Lynch syndrome, you can talk to your children about it. Being open with them can make them feel included and ease their worries.
Use language they understand and in an age appropriate way.
Explain:
- what you are doing to reduce your cancer risk
- tests such as a colonoscopy - this can help reduce their fear of tests they may have in the future
- that not everyone with Lynch syndrome gets cancer
When your children are older they will need to decide if they want to have a genetic test. You can ask your doctor, nurse or genetic counsellor (a specialist who can give you information about genetic testing and results) for advice on talking to your children about this as they get older.
Help and support if you or your family are affected by Lynch syndrome
Family planning if you have Lynch syndrome
Talk to your healthcare team and genetic counsellor if you want to have children in the future.
If you have concerns about the risk of passing on Lynch syndrome to future children there are options.
If you do not want to use your sperm or eggs you may be able to:
- adopt or foster a child
- use donated eggs or sperm as part of specialist fertility treatment
If you want to use your sperm or eggs, doctors can do tests for Lynch syndrome on:
- a fetus - this is called prenatal testing
- embryos, as part of in-vitro fertilisation (IVF) - this is called preimplantation genetic diagnosis (PGD)
If both you and your partner have Lynch syndrome
There is a one in a million chance a child will have constitutional mismatch repair deficiency (CMMRD) syndrome. This may happen if both of the child's parents have Lynch syndrome caused by a change in the same gene.
If there is a concern your child may have CMMRD they will be offered a genetic test to find out if they have it.
CMMRD can lead to childhood cancers such as brain tumours and leukaemia. They may also get bowel polyps and and certain skin features such as large flat brown patches on their skin.
