Brain tumours are the most common tumours that develop in children, they account for around 2 in 10 new cases of childhood cancer each year. Children and young people of any age can be affected and about 400 children in the UK develop brain tumours each year. Boys are affected slightly more often than girls.
A tumour in the brain can begin in the brain itself (primary) or has spread from another part of the body (secondary). This information is about primary brain tumours.
What are the common symptoms of childhood brain tumours?
These will depend on the size of the tumour, where it is and how it affects that part of the brain. Most commonly, children and young people present with symptoms described below. These are caused by the pressure inside the head being higher than it should be: a growing tumour may push normal brain out of the way, or block the flow of fluid in the brain. Doctors call this raised intracranial pressure, and it can cause symptoms such as:
- repeated headaches (often worse in the morning)
- vomiting (usually in the morning) or feeling sick
- one-sided weakness of legs, arms or face
- clumsiness or poor coordination (including difficulties with balance)
- fits (seizures) or tremors
- feeling very irritated or losing interest in day-to-day things
- changes in behaviour or emotional outbursts
- 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.
Some of these symptoms are common even without a brain tumour, and this can cause confusion in the early stages.
Where in the brain can the tumour be?
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:
- Cerebrum (or cerebral) – this is at the top of the head and is the largest part of the brain. It is 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.
- Cerebellum – this is the back part of the brain, and it controls movement, balance and coordination.
- 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.
Tumours affecting different parts of the brain can cause different symptoms. Around 60% of childhood brain tumours start in the posterior fossa region of the brain which is at the back of the skull and contains the cerebellum and brain stem.
What happens when a brain tumour is suspected
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.
Your doctor will want to hear about the symptoms in order to do an examination. This may include looking into the back the eyes with an ophthalmoscope to check for swelling, which can be a sign of raised pressure in the brain. They’ll usually check other things like balance, coordination, sensation and reflexes.
CT or MRI scan
Most children and young people will have a CT or an MRI scan, which looks in detail at the inside of the brain.
A CT scan is quick and often is useful as a first-line investigation, but it does not give as detailed pictures as an MRI. It uses quite a lot of x-rays, and so it is important to make sure we do not use it on too many people if it can be avoided.
An MRI scan uses no x-rays, and gives more detailed pictures, but takes much longer. Machines are noisy, and often younger children cannot lie still long enough to get proper images. This means it is sometimes necessary to have an anaesthetic for this scan.
Ordinary x-rays are not usually helpful for brain tumours.
These are usually done to make sure it is safe to do an operation, and can also be used to help diagnose certain types of tumour.
It is 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 going into hospital for an operation under general anaesthetic. The piece of tumour removed is then examined under a microscope by a specialist doctor called a pathologist.
A biopsy isn’t always done; it is sometimes better to remove the whole tumour in one operation. In this case, it will be a few days before the exact type of tumour is known.
Sometimes, it may be safer to do the operation in two stages. Part of the tumour might be removed in the first operation and the rest a few days later.
More rarely, because of the position in the brain and the appearances on scans, doctors may decide to proceed with treatment without a biopsy or other surgery.
Different types of brain tumours
There are different types of brain tumours and they are usually named after the type of cells they develop from. The main types are astrocytoma, ependymoma, and medulloblastoma, but there are many other, less common types.
Brain tumours can be either benign (non-cancerous) or malignant (cancerous).
These are referred to as benign due to the appearance under the microscope of the abnormal cells that make up the tumour.
Unlike malignant tumours, it is unusual for the cells to spread into other areas. However, because even benign brain tumours can have serious effects if they continue to grow, it is important to take a more active approach to treatment than for benign tumours that arise outside of the brain.
Sometimes it may be difficult to remove a benign tumour, because of where it is and, in this situation, other treatments may be needed. The most common tumour of this type is a low grade astrocytoma (also called low grade glioma). About 40% of brain tumours in children are low grade gliomas. Other benign tumour types include craniopharyngioma and choroid plexus 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 and sometimes more distant to the original tumour.
The main types that affect children are:
Medulloblastoma (15%) is the most common malignant brain tumour which usually develops in the lower part of the brain, the cerebellum. They may spread to other parts of the brain or into the spinal cord, and treatment must include the whole of this.
- Ependymoma (5-10%)
- Diffuse intrinsic pontine glioma (DIPG) (brainstem glioma) (5-10%)
- Embryonal tumours (formerly known as PNET) (5%)
- Atypical teratoid rhabdoid tumour (ATRT) (less than 5%)
- High grade astrocytoma (less than 5%)
- Intracranial germ cell tumours (less than 5%).
As there are different types of brain tumours, treatment will not be the same for everyone. Doctors will look at the type of brain tumour, its size and where it is in the brain before deciding on the best treatment.
Treatment might consist of one, or a combination, of the following treatments.
Usually, a neurosurgeon will operate to remove as much of the tumour as possible. Operations can be very long – it is not uncommon for these to be more than six or eight hours.
Sometimes, the fluid in and around the brain does not flow freely, as a result of the tumour or brain swelling. In this case, it may be necessary to place a fine tube (shunt) to drain excess fluid from the brain and into the lining of the tummy area (abdomen). You cannot see the shunt outside the body. Another way of treating this is to create another drainage route for the fluid to bypass the obstruction (called a ventriculostomy).
After the operation, children may spend some time in an intensive care ward or high dependency unit, so the nurses and doctors can keep a very close eye on them.
Once a diagnosis is known, a plan to treat any tumour left behind can be made. For benign tumours, there may be no further treatment, but for some, radiotherapy or chemotherapy will be required.
Radiotherapy treats cancer by using high energy radiation beams. As the beam passes through the body, it gives up energy which destroys tumour cells. Normal cells usually have the ability to repair themselves whilst abnormal (cancer) cells are destroyed. The aim of radiotherapy is to destroy as many abnormal cells as possible whilst causing as little damage as possible to normal cells.
Radiotherapy is delivered extremely carefully and accurately and lots of preparation is required before treatment can start. Radiotherapy is delivered in a number of daily treatments (or fractions) for up to 6 weeks but each fraction usually takes only a few minutes and is completely painless.
Sometimes more specialised types of radiotherapy may be used. The oncologist will explain more about this and any side effects that may be expected.
Chemotherapy uses drugs to get rid of cancer cells. Chemotherapy is given into the veins, or sometimes as a liquid or tablets by mouth. Treatment is often quite prolonged, with periods of time in hospital and gaps when you will be able to return home. This part of the treatment is planned by an oncologist.
Chemotherapy does result in side effects which are normally temporary. The specialist doctor and nurse will explain your child’s treatment and answer your questions so that you understand what is involved.
Other medicines may be needed for a while to reduce or control the symptoms of the brain tumour:
- Steroids – these are medicines that reduce swelling and inflammation in the brain and can help with symptoms
- Anticonvulsants – these are medicines that help prevent fits, which can be a problem before or after operations on the brain. They may only be necessary for a short period, but sometimes are needed for longer.
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. It is important to realise that a clinical trial is not an ‘experiment’, and your doctor will always offer you what is believed to be the best available treatment. Clinical trials are usually offered to explore ways of making new improvements to treatment, beyond what is already known.
Specialist doctors carry out many trials for brain tumours. If appropriate, the 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 is right for your child. You can also join a trial, and then withdraw if you change your mind at a later date.
Sometimes, clinical trials are not available. This may be because a recent trial has just finished, or because the tumour is very rare. In these cases, you can expect your doctors and nurses to offer treatment which is agreed to be the most appropriate, using guidelines which have been prepared by experts across the country. The Children’s Cancer and Leukaemia Group (CCLG) is an important organisation which helps to produce these guidelines.
After treatment is over, you will be seen regularly by specialists. This is to check progress and how well recovery from treatment is going. It is 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.
This information was written by the Children’s Cancer and Leukaemia Group (CCLG)
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