About childhood brain tumours

Around 560 children and young people aged 19 and under are diagnosed with a brain tumour each year in the UK. Like with adult brain tumours, the causes of childhood brain tumours are not yet fully understood. The following is an overview of brain tumours in children.

What is a brain tumour?

Our bodies are made up of billions of cells. Normally, these cells reproduce and repair themselves in a controlled way and do not cause us any problems. If for some reason this process gets disrupted, the cells can begin to grow in an uncontrolled way, creating a lump of cells called a tumour. A tumour that grows in the brain is called a brain tumour. Tumours can also grow along the spinal cord. Brain and spinal tumours are called Central Nervous System (CNS) tumours. There are over 100 different types of brain and spinal tumour and they are usually named according to the types of call they start to grow from and/or the parts of the brain they grow in.

A primary brain tumour begins somewhere in the brain - it has not spread from elsewhere in the body. A secondary brain tumour (known as metastasis) has begun somewhere else in the body and has spread to the brain.

Normal cell division and growth (below):

Diagram of normal cell division

Abnormal cell division and growth, leading to the development of a tumour (below):

a graphic diagram showing the process of cancer cell division

How will I know if my child has a brain tumour?

Symptoms of a brain tumour vary from child to child and can also depend on where they are located in the brain. Some of the brain tumour symptoms are similar to those of other childhood illnesses. The presence of a symptom does not necessarily mean that your child has a brain tumour.

Common symptoms of childhood brain tumours include:

  • persistent vomiting/feelings of nausea (over a two week period)
  • recurring headache (over a four week period, particularly on waking)
  • abnormal eye movements
  • fits or seizures
  • behaviour change
  • abnormal balance/walking/co-ordination
  • blurred/double vision
  • abnormal head position (such as a head tilt)
  • delayed or arrested puberty (puberty that doesn't start, or starts but doesn't progress as expected)

If your child has one or more of the above, you should take them to see a GP, explaining your worries. If they have two or more, ask for an urgent referral which means that your child will be given an appointment with a specialist who can further investigate the causes of the symptoms.

More information about the symptoms of a brain tumour in children can be seen on the Symptoms of brain tumours in children page or on our HeadSmart website. HeadSmart is our UK-wide campaign that aims to reduce the time is takes to diagnose children and young people with a brain tumour and so achieve better outcomes.

Diagnosis

When your doctor refers your child to a specialist, they will ask questions about your child's health, carry out a physical examination as well as a number of other tests (such as blood tests). Your child will also need an MRI (magnetic resonance imaging) or CT (computerised tomography) scan to confirm whether a brain tumour is present. Following a scan, if a brain tumour is found, a biopsy may be taken from your child's tumour. Alternatively, if possible surgical removal of the tumour will be undertaken. In both of these cases, cells from the tumour will be analysed in a laboratory, so that a detailed diagnosis of the exact tumour type and grade can be given which will determine the best course of treatment for your child.

What causes brain tumours and risk factors?

Very often, the answer is that we just do not know. This can be one of the most difficult things to accept as a parent as it can leave you feeling helpless. There is no research that shows that anything you may have done during pregnancy or in your child's early infancy could have caused your child's brain tumour.

How are childhood brain tumours treated?

Several factors influence which treatment will best help your child. A team of specialised professionals will consider your child's individual diagnosis and take account of factors, such as the size and location of the tumour, the type of tumour your child has and how quickly it is growing. They will also consider your child's age and their general health.

  • Surgery - will often be used to remove as much of the tumour as possible. Surgery isn't always possible as sometimes it would be too risky to operate if the tumour is located close to or wrapped around an important part of the brain such as the brain stem and the benefits of surgery would be outweighed by the dangers.
  • Radiotherapy - (generally given only to children who are at least three years old)
  • Chemotherapy - may be used on their own, in combination or after surgery to try to remove any remaining tumour cells.
  • Proton Beam Therapy - a type of radiotherapy, which is not suitable for all brain tumours and it also currently not run in the UK for use in brain tumours, however it can be received outside of the UK through the NHS if your child is suitable

It is important to know that your child's medical team will tailor your child's treatment to provide the treatment that is best for your child. If you are worried or concerned at all, you should speak to your child's medical team who will be able to help you understand the treatment decisions that have been made. If you feel your child is not getting the correct treatment, you can ask for a second opinion.

What long-term effects might my child have?

Long-term effects from a childhood brain tumour vary from child to child and depend on the exact location of the tumour within their brain and the therapy given. Your child's consultant will be able to talk you through possible long-term effects they might experience. Some children with a brain tumour grow up to have little or no long-term effects while others may experience some of the following:

  • learning difficulties - These can occur as a result of the tumour itself, the impact of treatment, or the fact that they have had to take time out of school and therefore miss lessons.
  • sight problems - A brain tumour can cause partial or full loss of sight. This can be a result of the location of the tumour within the brain or the long term effects of radiation therapy.
  • impacts on growth, puberty and fertility – Treatments such as radiotherapy and chemotherapy, can delay puberty and affect growth and fertility. Your child's doctor can address these impacts with some medicines and artificial hormone replacement.
  • physical problems - Some children who have had a brain tumour will be left with a long-term physical effect, such as weakness in a limb (hemiplegia), or difficulties with balance. Physiotherapy is one possible treatment that may help children to adapt.
  • emotional difficulties A brain tumour and treatment can cause changes to the brain which can lead to emotional changes and difficulties. Emotional difficulties can also be caused from changes in your child's social interactions – from feeling different from friends and not being able to participate in the same activities.

Coping as a family

Coping with a diagnosis of a childhood brain tumour can have a huge impact on you, as parents/carers, and on the rest of your family. The Brain Tumour Charity have an excellent Children and Families Service, who can give help to you or your child if you need it. We have a dedicated Children and Families Worker who can offer both practical and emotional support to parents, children and siblings. If you have any questions or would like to talk to a member of the Support and Information team please phone 0808 800 0004 or email support@thebraintumourcharity.org

Common brain tumour types in children

There are many different types of brain tumour, below are some of the most common types. For further information on more types of childhood brain tumours please see our fact sheet which can be found at the bottom of this page.

Glioma

Around half of all childhood brain tumours are a type of glioma which means they are derived from the various glial cells. Astrocytes, oligodendrocytes, and ependymal cells are all types of glial cells.

Of all gliomas, the largest subgroup is astrocytoma (arising from astrocytes) and these constitute over two-fifths (43%) of all brain and spinal tumours in children.

Astrocytomas

Most astrocytomas tend to be slow growing (73% are low grade) and are diagnosed throughout childhood with no strong pattern by either sex or age.

Approximately 10-15% of childhood brain tumours in the UK are a type of high-grade astrocytoma called a Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is a fast growing, type of brain tumour that originates in the brain stem. They often appear in children aged around six years old.

Ependymomas

Ependymomas account for about 10% of childhood brain tumour – they are the third most common type of brain tumour in children

PNET tumours

About 20-25% of childhood brain tumours are primitive neuroectodermal tumours (PNETs), which are malignant tumours. PNETs occur most frequently in younger children and incidence decreases with age with more than half of all PNETs being diagnosed in children less than 10 years old.

Medulloblastomas

These are the most common type of high-grade tumour in children. They make up around 20% of all childhood brain tumours. They are more common in boys than girls and are most commonly diagnosed at around the age of 5 years.

Craniopharyngioma

These account for 8% of childhood brain tumours. They do not usually spread, but are near important structures in the brain and can cause problems as they grow. They can cause changes in hormone levels and problems with eyesight. Children with craniopharyngioma can experience weight gain and growth problems.

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