Follow up and late effects

Brain tumours and their treatment can cause physical and mental changes. Understanding about what they might be, how your child’s team will monitor them, and possible treatments can help you cope. 

Your child sees their specialist doctors in clinic for up to 5 years after they've finished treatment. After that, your child is likely to be seen in a late effects clinic. Here, they might see a doctor, an advanced nurse practitioner or a late effects specialist nurse. Your child might see a number of professionals, depending on their needs.

At the moment, people who have had cancer in childhood have lifelong follow up. Researchers want to find out if everyone needs this level of care after childhood cancer.

At first, they are usually seen every 1 to 2 months. And they have regular scans to check on their progress. And if they are recovering well it becomes less frequent. At 5 years they're seen once a year. These appointments are important. Your child’s doctor is looking for:

• any signs or symptoms of the brain tumour coming back

• how they are growing and developing

• how your child is getting on psychologically and socially after their treatment

• any other problems or side effects of treatment

Together you, your child, and the treatment team can plan the best way to manage any problems if they come up.