Brain tumours in children
Brain tumours are the most common tumours that develop in children. Children of any age may be affected. About 400 children in the UK develop brain tumours each year. Boys are affected slightly more often than girls.
More children than ever are surviving childhood cancer. There are new and better drugs and treatments. But it remains devastating to hear that your child has cancer, and at times it can feel overwhelming. There are many healthcare professionals and support organisations to help you through this difficult time.
Understanding more about the cancer your child has and the treatments that may be used can often help parents to cope. We hope you find the information here helpful. Your child's specialist will give you more detailed information. If you have any questions it’s important to ask the specialist doctor or nurse who knows your child’s individual situation.
Brain tumours can be either primary or secondary. Primary brain tumours develop in the brain. Secondary brain tumours happen when cancer cells from a cancer that started somewhere else in the body spread to the brain.
This information is about primary brain tumours. For more detailed information, contact The Children's Cancer and Leukaemia Group (CCLG) who provide a booklet Brain and spinal tumours - a parent’s guide
Signs and symptoms of brain tumoursBack to top
These will depend on the size of the tumour, where it is and how it affects that part of the brain.
There’s only a fixed amount of space in the skull for the brain. So as a tumour grows, there’s a rise in pressure in or around the brain (raised intracranial pressure). This can cause symptoms such as:
- headaches (often worse in the morning)
- vomiting (usually in the morning) or feeling sick
- fits (seizures)
- feeling very irritated or losing interest in day-to-day things
- eye problems, such as abnormal eye movements, blurring or double vision
- feeling very tired much more quickly than usual
- feeling extremely sleepy (drowsy) for no reason.
Brain tumours can also cause problems with balance and walking, weakness down one side of the body, or changes in behaviour. There’s often a simple explanation for many of the symptoms we’ve mentioned. But if your child has any of these or you’re worried, it’s important to see your family doctor (GP) straight away.
The brain is contained within the skull, which protects it. Between the brain and the skull, there are three layers of membrane called the meninges. These completely cover the brain and spinal cord and help to protect it. Between two of these layers is a space that contains a fluid called cerebrospinal fluid (CSF), which circulates around the brain and spinal cord.
The main parts of the brain are:
- The cerebrum - this is at the top of the head and is the largest part of the brain. It’s made up of two halves or hemispheres. It controls thinking, learning, memory, problem solving, emotions and touch. It also helps us be aware of our body position.
- The cerebellum - this is the back part of the brain, and it controls movement, balance and coordination.
- The brain stem - this connects the brain to the spinal cord and is in the lower part of the brain just above the back of the neck. It controls breathing, body temperature, heart rate and blood pressure, eye movements and swallowing.
Causes of brain tumoursBack to top
The causes of brain tumours are unknown but research is ongoing.
Tests and diagnosis for brain tumoursBack to top
Your child will need to have different tests and will usually see different specialists. Having tests and waiting for results takes time and can be frustrating. Tests are very important because they help the specialist to plan the best treatment for your child.
Knowing what a test involves can make things a bit easier. The specialist doctor and nurse will explain things but don’t be afraid to ask questions.
Our section on children’s cancers gives more information about what the tests and scans involve.
The specialist will also examine the back of your child’s eyes with an instrument that has a light on the end of it (ophthalmoscope) to check for swelling. This can be a sign of raised pressure in the brain. They’ll usually check other things like balance, coordination, sensation and reflexes. Your child may also need to have their eyesight and hearing tested, as well as some other tests.
Your child may have some of these tests:
CT scan or MRI scan
These will show a detailed picture of the inside of the brain.
Brain angiogram scan
This shows the structure of the blood vessels in the brain and is sometimes used to help plan surgery.
This involves taking a sample of cerebrospinal fluid from the spinal cord and checking it for cancer cells.
These are usually done to check your child’s general health and can also be used to help diagnose a type of tumour called a germ cell tumour.
It’s often necessary for doctors to remove a small part of the tumour (biopsy) to find out exactly what type of tumour it is. It means your child will need to go into hospital for an operation under general anaesthetic. The piece of tumour that’s removed is then examined under a microscope by an expert doctor called a pathologist.
A biopsy isn’t always done. The type of tumour can be identified after an operation to remove the whole tumour, or part of it.
There are different types of brain tumours and they’re usually named after the type of cells they develop from.
Brain tumours can be either benign (non-cancerous) or malignant (cancerous). Most primary brain tumours are benign.
Benign brain tumours
These remain in the part of the brain that they started in and do not spread into other areas of the brain. Sometimes it may be difficult to remove a benign tumour because of where it is in the brain. In this situation, other treatments are needed
Malignant primary brain tumours
These are most likely to cause problems by causing pressure and damage to the areas around them and possibly by spreading to the normal brain tissue close by.
The two main types that affect children are:
Gliomas develop from the supporting cells of the brain known as glial cells. They can be subdivided into two main types in children: astrocytomas and ependymomas. Doctors group them by how quickly they grow (known as the grade of the tumour) and how the cells look under a microscope.
These usually develop in the cerebellum, at the back of the brain. They may spread to other parts of the brain or into the spinal cord.
Treatment for brain tumoursBack to top
Because there are different types of brain tumours, treatment won’t be the same for everyone. The doctors will look at the type of brain tumour, its size and where it is in the brain before deciding on the best treatment.
These are the main treatments used to treat brain tumours. Your child may have one treatment or a combination of treatments.
Usually, a surgeon specialising in brain tumours (neurosurgeon) will operate to remove as much of the tumour as possible.
A fine tube (shunt) may be inserted to drain excess fluid from the brain and into the lining of the tummy area (abdomen). You can’t see the shunt outside the body. It stops the pressure in the brain from rising. Another way of treating this is to create another drainage route for the fluid around the obstruction (called a ventriculostomy).
After the operation, your child may spend a few days in an intensive care ward so the nurses and doctors can keep a very close eye on them.
Radiotherapy treats cancer by using high energy rays that destroy the cancer cells. It may also be used as the main treatment if surgery is not possible. Sometimes more specialised types of radiotherapy may be used. Your child’s oncologist will explain more about this.
uses anti-cancer drugs to get rid of cancer cells and may be given when the cancer cannot be completely removed with an operation. Chemotherapy is given by an oncologist.
It is used to treat medulloblastoma and also more commonly to treat other types of brain tumours.
Chemotherapy may also be used if the tumour cannot be completely removed with an operation. It can be given as tablets or by injection into a vein (intravenously).
The specialist doctor and nurse will explain your child’s treatment and answer your questions so that you understand what’s involved.
Medicines your child may need to take
Your child may need to take medicines for a while to reduce or control the symptoms of the brain tumour.
Steroids reduce swelling or inflammation in the brain and so they can help with symptoms.
Medicines that help prevent fits
These are known as anticonvulsants. They’re given if your child has had any fits (seizures).
Side effects of treatment for brain tumoursBack to top
This depends on the treatment your child has and your child’s doctor and specialist nurse will explain more about what to expect. Always let them know about any side effects your child is having. Many side effects can be well controlled or made easier.
Some possible common side effects of radiotherapy and chemotherapy include:
Both radiotherapy and chemotherapy can cause hair loss. Your child’s hair will usually grow back again after treatment is over.
Tiredness is very common with both treatments and may continue for weeks after chemotherapy or radiotherapy finishes.
Radiotherapy and chemotherapy may make you feel sick, this but it can usually be controlled well with anti-sickness drugs, which the oncologist will prescribe for your child.
Increased risk of an infection
Chemotherapy can increase the risk of infection, so it’s important to contact the oncologist or specialist nurse straightaway if your child has a temperature, any signs of infection or suddenly feels unwell.
Skin changes in the treated area if your child is having radiotherapy
Skin may become red, flaky or sore if your child has fair skin and may become darker and flaky if your child has dark skin. You’ll be given advice on looking after the skin in the treated area.
Clinical trials for brain tumoursBack to top
Many children have their treatment as part of a clinical research trial. Trials aim to improve our understanding of the best way to treat an illness, usually by comparing the standard treatment with a new or modified version. Specialist doctors carry out many trials for brain tumours. If appropriate, your child's medical team will talk to you about taking part in a clinical trial, and will answer any questions you have. Written information is often provided to help explain things.
Taking part in a research trial is completely voluntary, and you'll be given plenty of time to decide if it's right for your child. There’s more information in our section on children’s cancers.
Follow-up for brain tumoursBack to top
After treatment is over, your child will be seen regularly by specialists. This is to check their progress and how well they’re recovering from treatment. It’s also to check that they don’t have any long-term problems from treatment.
You can contact your child’s specialist doctor or nurse at any time if you have any worries about their health.
Sometime treatments may cause possible long-term side effects that may develop later. Your child’s oncologist or specialist nurse will explain the possible risk of any long-term effects in your child’s situation. Children are monitored for any long-term problems following treatment so that they can be picked up and managed early on.
There’s is more detailed information about this in our section on children’s cancers.
As a parent, the fact that your child has cancer is one of the worst situations you can be faced with. You may have many emotions, such as fear, guilt, sadness, anger and uncertainty. These are all normal reactions and are part of the process that many parents go through at such a difficult time.
It's not possible to address in this section all of the feelings you may have. However, our information on children’s cancer talks about the emotional impact of caring for a child with cancer and suggests sources of help and support.
Your child may have a variety of powerful emotions throughout their experience of cancer. Our section on children’s cancers discusses this further and talks about how you can support your child.
Children's Cancer and Leukaemia Group (CCLG)
CCLG coordinates research and care for children and their parents. There are 21 CCLG specialist centres for the treatment of childhood cancer and leukaemia, covering all areas of the UK and Ireland (there's a map of the centres on the website). Has information about the CCLG, childhood cancer and leukaemia.
CLIC Sargent offers practical support to children and young people aged 21 and under, with cancer or leukaemia, and to their families.
HeadSmart – Be Brain Tumour Aware
HeadSmart is a project that aims to enhance the awareness of symptoms of brain tumours in children and young people.
The Brain Tumour Charity
The Brain Tumour Charity
that funds research into brain tumours and offers support and information to people with brain tumours, and their families.
This section has been compiled using information from a number of reliable sources, including:
With thanks to: Dr Steve Lowis, Consultant Paediatric Oncologist; and the people affected by cancer who reviewed this edition.
Reviewing information is just one of the ways you could help when you join our Cancer Voices network.
We worked with the Children's Cancer and Leukaemia Group (CCLG) to write our information about children's cancer.