Help and support - Lynch syndrome

Getting tested for and living with Lynch syndrome may affect you and other members of your family differently.

You may find it brings emotional challenges and causes uncertainty, especially about the risk of cancer. There is help and support available to help you cope with these feelings.

Knowing about Lynch syndrome allows you and your family to get advice and support to:

• prevent or reduce your risk of cancer
• find cancer early when it is easier to treat

Ways you can reduce your risk of cancer if you have Lynch syndrome

How to tell your family

Your parents, children, and siblings have a 1 in 2 chance of having the same genetic change. So it's important to tell them about your diagnosis. Knowing if you or a family member has Lynch syndrome can save lives.

Your doctor, nurse or genetic counsellor will give you advice on how to tell family members. They may also give you a letter that your relatives can give to their GP and get a referral to a cancer genetics service.

Encourage your family members to talk to each other about their health. This can help to identify cancer risks caused by lifestyle or by inherited gene changes.

If they do not want to talk about it, respect their wishes. Tell them you are available if they have questions. You can help them when they are ready to find out more.

Genetic results can affect family relationships. Each family member may react differently to the news.

Lynch syndrome and children

Supports

Having a strong support network is important.

You can get support from:

• other families affected by Lynch syndrome through Lynch Syndrome Ireland
• your local cancer support centre - if you or a family member has cancer
• the Irish Cancer Society

Find a cancer support centre

When to ask for psychological help

If you are finding it hard to cope with your emotions after a diagnosis of Lynch syndrome, it is important to ask for help.

Ask your healthcare team or genetic counsellor about talking to a trained psychologist, psychotherapist or counsellor.

You can also ask your GP or local cancer support centre about psychological supports.

Do this if difficult feelings become more intense over 4 weeks and you:

• have low mood with loss of interest that does not go away
• feel isolated or lonely
• are anxious or worrying
• have strong emotions often - such as anger, frustration, guilt, grief and uncertainty