Recovery for children with brain tumours

Brain tumours and their treatment can cause physical and mental changes. Find out about what they are, how your doctor will monitor them, and treatments that might help.  

Research into side effects

Research is continuing to improve our understanding of treatment side effects. The aim is that the number of children permanently affected by their treatment will become less.

Research has shown that children under 3 who have radiotherapy to the brain, are more likely to have changes to how their brain works after treatment (their brain function). This might cause changes in their level of intelligence or ability to learn. It is because the central nervous system is not fully developed at this age. 

Many young children with brain tumours now have chemotherapy to start with. This keeps their tumour under control until they are old enough to have radiotherapy. This is a recent change so the full effect is not yet known. Hopefully, the number of children permanently affected by their treatment will become less.

The Department of Health, Macmillan Cancer Support and NHS Improvement have set up the National Cancer Survivorship Initiative (NCSI). This initiative is looking at issues people have when they finish treatment. For example, it wants to have a better understanding of long term treatment side effects and who is most at risk of side effects.

Physical problems

Physical problems following childhood brain tumours include:

• limb weakness 
• poor balance
• shakes (tremors) 
• fits (seizures) or blackouts 
• more rarely, hearing or sight problems 

Physiotherapy and rehabilitation can help your child to recover from some physical problems. The brain can overcome these effects to some extent. Your child's physical strength and ability might improve in time.

The Scottish Intercollegiate Guidelines Network (SIGN) guidelines recommend that all childhood cancer survivors should have advice about:

• healthy eating
• keeping a healthy weight
• exercise
• importance of not smoking
• taking part in national screening programmes when invited

Growing problems

Your child will have their height, weight, and body mass index (BMI) regularly checked until they reach their adult height. 

Radiotherapy to or near the pituitary gland can cause a shortage of growth hormone. This could affect your child’s growth. Your child can have injections of man made growth hormones to correct this imbalance.

The levels of other hormones may also change. So your child may need to see a paediatric endocrinologist who can monitor this.

Radiotherapy to the spine can affect adult height, as it stops the bones growing. Unfortunately, there is little that can be done about this. Talk to your child's specialist if you're concerned. They might be able to reassure you or give you an idea of what to expect.

Educational problems

Some children have problems with learning after a brain tumour. This is can due to the tumour and treatment. It can also be due to the stress of the whole experience and missing out on normal life for a time. For example, going to school and keeping up with friends.

Many children are permanently affected by their treatment. They might have a drop in their IQ scores. They may not cope as well with schoolwork as they did before. They might have problems with:

• learning new skills and ideas
• short term memory
• problem solving

Some children have learning difficulties and need extra support at school. Or need to go to a school for children with special needs.

Ask your doctor if your child needs assessments, for example by an education psychologist. This might be the case if your child had to have radiotherapy to their brain at a young age. They might need these assessments before treatment and regularly after treatment. 

This can help you find out how your child is likely to manage at school. If necessary, your child can have a statement of extra educational needs. This sets out what support your child needs with their education.

It’s important that your child's hearing and eyesight are regularly checked. Any problems can then be picked up early to help your child cope in the classroom.

Behavioural problems

Some children have behavioural problems after treatment for a brain tumour. This can be due to the stress of illness and treatment. This might gradually improve in some children.

Other children might have behavioural problems because of changes in the brain. These can be caused by the tumour and its treatment. These side effects can be more long term. Ask your child's treatment team or school about support that is available. 

It can be hard to know how to manage your child’s behavioural problems at home. Give yourself and your child time to settle back to a routine at home. Especially if you have been in and out of hospital for treatment for a long time. Some behavioural problems are out of your child’s and your control. Others can and do improve with time and the right support.

It’s not uncommon for children who have spent a lot of time in hospital to behave more like their younger selves. This regression is normal and a way of coping. For some children with a brain tumour, this might be their new developmental level. For others, this might improve with time.