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.

End of treatment summary and care plan

Children and young people who have had treatment for cancer should have a care plan at the end of treatment. This plan should include:

• their diagnosis
• all the treatment they have had
• possible problems they might have
• future appointments that have been arranged
• how any future problems should be checked out
• who to contact with any problems

Long term side effects

Many parents worry about the possible long term effects of treatment. Many children treated for a brain tumour in childhood go on to develop a long term side effect. But not everyone has severe problems. The possible long term effects depend on:

• where the tumour was in the brain
• the type of treatment your child has had
• the treatment amounts (doses) they had
• the age they were when they had treatment

It is important to remember that the risk of side effects needs to be weighed up against the benefits of treatment. More children are surviving childhood brain tumours as treatments have improved over the years. And the risk of long term effects is also becoming less as childhood cancer treatment has changed.

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

Seizures (fits) and epilepsy

Some children develop epilepsy after treatment for a brain tumour. It’s more common in children who have had a tumour in an area of the brain called the frontal lobe. Epilepsy means your child is more likely to have seizures (fits).

Seizures can vary in how they present. Some children might have some jerking or twitching of their hand, arm or leg. Or their seizure might affect their whole body. Some seizures just cause a moment of unconsciousness.

Seeing a seizure can be scary for family and friends too. Your child won’t feel any pain. They won’t remember what happened after the seizure.

Seizures can often be controlled well with anti epilepsy medicines. And have only a limited impact on your child’s day to day life.

If your child was having seizures due to the tumour before treatment, they may not have any again after surgery. Or they may come back after a time without having any. Unfortunately for a small number of children the seizures may continue despite having the tumour removed.

Sleeping problems

Children can develop problems with their sleep after treatment for a brain tumour. This might be:

• problems getting to sleep and staying asleep
• sleeping for longer
• feeling sleepy in the day

Starting a bedtime routine, that is realistic to stick to can help. This includes setting a time to go to bed at night. And a time to get up in the morning. Keeping their bedroom as a quiet place just for sleeping can help too.

If this doesn’t help, let your child’s treatment team know. There are other things that can help including:

• medication
• light therapy
• talking therapy
• physical activities

Puberty and fertility

Radiotherapy and chemotherapy can affect puberty and the ability to have children (fertility). For example, girls who have had radiotherapy to the head can sometimes go through puberty early.

You might 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 check for early or late puberty at their follow up appointments. The doctor might recommend your child has hormone replacement therapy to make up for any loss of sex hormones caused by their treatment.

Fertility

Your team should talk with you, and your child if they're old enough, about future fertility before treatment starts.

There are ways to preserve fertility before treatment. Whether these are suitable for your child depend on:

• your child’s age
• if they are a boy or a girl
• what treatment your child will be having
• if it’s safe to delay treatment

Fertility preservation for boys

Teenage boys who have been through puberty are able to sperm bank. Sperm banking means collecting and storing sperm. Your child can then use the sperm later to father a child through fertility treatment.

Other ways boys may be able to keep their fertility includes:

• freezing testicular tissue
• removal of sperm during an operation

Fertility preservation for girls and young women

It is more difficult for women to keep their fertility. But there are ways that they might be able to do it, but this will depend on different factors.

Possible ways to keep fertility include:

• freezing eggs
• freezing ovarian tissue

Some of these methods may not be suitable for children or young women with a brain tumour. Talk to your child’s treatment team about their options.

The Future Fertility Trust can help young people by providing expert care and support to enable them to access the best possible fertility advice and treatment to help them preserve their fertility.

After treatment

Men and women who had cancer as a child and have fertility problems can be referred to a specialist fertility clinic. They can provide psychological support and suggest whether fertility treatments might help.

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.

Second cancers

There is a small risk of developing a second cancer later in life after treatment for children’s cancers. The risk is greater for children who have had radiotherapy.

Adult survivors of childhood cancer can make lifestyle choices to reduce the risk. These include:

• not smoking
• keeping safe in the sun

Transition

Some families worry about their child moving from children’s services into the adult late effects service. They are sometimes concerned that the team don’t know their child well, or that adult services are busier and professionals have less time. And, it can be difficult to know you're going to be less directly involved in your child’s care at this point.

‘Transition’ means this move, from children’s to adult care. Health professionals know how important this move is and there has been lots of work done in cancer services to make this move easier for everyone. Some hospitals have transition clinics to help make this as smooth as possible. It allows your older child to know what to expect and ask any questions they have.