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Recovery for children with brain tumours

Men and women discussing brain tumours

This page tells you about children recovering after treatment for brain tumours. There is information about

 

A quick guide to what's on this page

Recovery for children with brain tumours

Brain tumours and their treatment sometimes cause lasting physical and mental changes.

Physical problems

Around two thirds of children treated for brain tumours have some sort of physical problem afterwards, such as weakness in a limb or poor balance. The level of the problem varies depending on where the tumour was and how it was treated. Physiotherapy and other rehabilitation methods can help. Some children will occasionally have fits or blackouts, headaches or migraines. A few are left with sight or hearing difficulties.

Growth, puberty and fertility

Radiotherapy to the pituitary gland or nearby areas can leave children without enough growth hormone. Injections of man made growth hormone can correct this. Radiotherapy to the spine can affect the adult height that a child will reach. Sex hormones can also be affected by brain tumour treatment. You may not know if this has happened until the child reaches the age when you would expect puberty to begin. They may be offered hormone replacement.

Educational and behavioural problems

Sadly, many children are permanently affected by having treatment for a brain tumour. They may have a drop in their IQ score and problems with learning. Some children will need extra educational support. Some children develop behavioural problems. For some these gradually improve, but for others they can be long lasting.

 

CR PDF Icon You can view and print the quick guides for all the pages in the Living with brain tumours section.

 

 

Research into children's treatment side effects

Brain tumours and their treatment can cause physical and mental changes. In some cases, these are long lasting or permanent. Around two thirds of children will have some type of disability due to their brain tumour. The level and type of disability will depend on the type, size and position of the tumour and how exactly it was treated. 

We don't have the full picture of the effects in adulthood of surviving a brain tumour. This is because many of the therapies used have been introduced since the 1970's and so the oldest children treated will only be in their 30's or 40s. 

Treatments are continuing to be improved through years of research. Researchers and specialists who work with children are very aware of the possibility of treatments causing long term side effects. They do everything they can to reduce this risk. 

Research has shown that very young children (under 3) who have radiotherapy to the brain are more likely to have changes to their brain function afterwards. This may cause changes in their level of intelligence or ability to learn. It is because their central nervous systems are not yet fully developed at this age. 

Many young children with brain tumours now have chemotherapy to keep their tumour under control until they are old enough to have radiotherapy safely. This is a recent change so we don't know the full effect yet. We hope that the number of children permanently affected by their treatment will soon fall.

The Department of Health, Macmillan Cancer Support and NHS Improvement have set up the National Cancer Survivorship Initiative (NCSI) to look at issues people have when they finish treatment. They are looking at several different areas including the long term side effects of treatment and identifying people at risk.

 

Physical problems

Any physical problems will depend on where the brain tumour was. The tumour and treatment can leave children or adults with a weakness of an arm or leg, or on one side of the body. A survey from the National Cancer Institute (NCI) of the USA estimates that more than half of the children treated for a brain tumour will have some sort of physical problem, for example limb weakness, poor balance or shakes (tremors). 

If your child has a physical problem, physiotherapy and other rehabilitation methods can help. The brain can overcome these effects to some extent and your child's physical strength and ability may improve in time.

Other physical problems can come and go. According to the same NCI survey, about 1 in 4 children have fits (seizures) or blackouts occasionally after treatment for a brain tumour. And about 1 in 3 have headaches or migraines.

Other physical problems are rarer and depend on the type and position of the tumour. A smaller number of children can lose the sight of one or both eyes, or have hearing difficulties.

To keep them as healthy as possible, the Scottish Intercollegiate Guidelines Network (SIGN) guidelines recommend that all childhood cancer survivors should have advice on healthy eating, exercise and the importance of not smoking.

 

Lack of growth

There are guidelines for the monitoring of all children who've had cancer. They should all have their height, weight and body mass checked regularly until they reach their adult height.

If your child had radiotherapy to their pituitary gland or nearby areas, the brain may not make enough growth hormone afterwards. If your child has a shortage of growth hormone, injections of man made growth hormone can correct the imbalance. The levels of other hormones may also change and your child may be monitored by a paediatric endocrinologist.

Radiotherapy to the spine can affect adult height. Unfortunately there is little that can be done about this. Talk to your child's specialists if you are concerned. They may be able to reassure you or give you an idea of what to expect.

 

Early or late puberty and fertility problems

Radiotherapy and chemotherapy can affect both puberty and the ability to have children (fertility). You may not know if your child has been affected until they reach the age at which you would expect puberty to begin. Your child's treatment team will monitor this at your child's check ups. Talk to your child's specialist if you are worried. 

The treatment team may be able to reassure you that the chances of problems are small in your child's case. If your child does develop problems, they may be offered hormone replacement therapy to make up for any loss of sex hormone production caused by their treatment.

Girls who have had radiotherapy to the head sometimes have early puberty and their treatment team will monitor them for signs of this during their check ups.

 

Educational problems

Some children have problems with learning after a brain tumour. Some of the changes will be due to the tumour and treatment. Some problems will be due to the stress of the whole experience and missing out on normal life, such as going to school and keeping up with friends. It is bound to be difficult for both the child and parents when the time comes to try to get back to normal.

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

  • New learning – skills or ideas
  • Poor short term memory
  • Problem solving

Some children have learning difficulties and need extra support at school or education in a special unit. The National Cancer Institute (NCI) survey estimates that more than half the children treated for a brain tumour need some sort of special educational input. The younger the child when they are diagnosed and treated for a brain tumour, the more likely this is. This is because the nervous system is less developed and more likely to be damaged, particularly by radiation.

The Scottish Intercollegiate Guidelines Network (SIGN) recognise that children who have radiotherapy at a young age can have problems with their nervous system development as well as social and educational difficulties. So specialists no longer give brain radiotherapy to children under 3 if at all possible.

SIGN recommend that children who need radiotherapy to the head should have a mental and educational assessment before they start treatment and then yearly afterwards. The assessment is carried out by an educational psychologist. This can help you to find out how your child is likely to manage at school and to identify what extra educational needs there are (if any). If necessary, your child can have a statement of extra educational needs. This sets out what support your child needs with education and identifies the support that will be provided. The statement should be reviewed every so often to make sure that what is being provided is still what your child needs.

There is information about long term effects of radiotherapy in the radiotherapy for brain tumours section.

 

Behavioural problems

Some children have behavioural problems. This can be due to the stresses and strains of illness and treatment and may gradually improve in some children. For other children, it may be due to the part of the brain involved or related to changes in the brain after the tumour and treatment and can be more long lasting.

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Updated: 4 December 2013