Decisions about treatment for children’s brain tumours

Doctors plan your child’s treatment in one of the major children’s cancer centres. This is called the principal treatment centre (PTC). Your child has some of their treatment in this specialist centre, but if this is not your nearest hospital then some care takes place at a hospital closer to home. This hospital is called your:

  • shared care hospital
  • paediatric oncology shared care unit (POSCU)

Blood tests, dressing changes or other aspects of care might take place in your home.

Deciding which treatment your child needs

A team of doctors and other professionals discuss the best treatment and care for your child. They are called a multidisciplinary team (MDT).

The treatment your child has depends on:

  • the type of brain tumour
  • where the tumour is
  • how abnormal the cells look under a microscope (the grade)
  • if the tumour has spread
  • how well your child is generally and what symptoms they are having

The multidisciplinary team (MDT)

Your child’s multidisciplinary team work together to plan, deliver and support your child’s care. You will get to know some members of the MDT more than others. You meet a lot of people in the hospital when your child is first diagnosed. Some of the people you might meet include:

Specialist doctors and nurses

  • children’s brain and spinal cord surgeons (paediatric neurosurgeons)
  • children’s brain specialist doctors (paediatric neurologists)
  • chemotherapy and radiotherapy specialists (neuro oncologists)
  • a specialist in scans of the brain and spinal cord (neuro radiologist)
  • pathologist who is an expert in brain and spinal cord diseases
  • paediatric endocrinologist – a specialist in hormones including puberty hormones in children and teenagers
  • palliative care specialists – for help with controlling symptoms
  • clinical nurse specialist – a specialist nurse with a knowledge of children’s brain tumours, they often act as your child’s key worker, linking all the other professionals together

Other members of the MDT

There are other members of the MDT that are not doctors or nurses. They all play a very important role in looking after your child.

  • child and adolescent psychologist – available for emotional or psychological support
  • physiotherapist
  • social worker
  • play specialist – they understand child development and use therapeutic and play activities to help your child cope when in hospital
  • occupational therapist - helping your child with their everyday activities
  • dietician
  • speech and language therapist
  • radiographers

What treatments will my child have?

The main treatments are:

  • surgery
  • radiotherapy
  • chemotherapy

Some children have one or more of these treatments. For others, none of these treatments are suitable straight away and they have different treatments or monitoring with scans.

It’s important to know that brain tumour treatment is different for every child. Ask your child’s doctor what treatments they are likely to have.

Surgery

Your child might have surgery to:

  • remove the whole tumour
  • remove most of the tumour (this is called subtotal resection or debulking)
  • take a sample of tumour so a pathologist can look at it down a microscope – this is called a biopsy

Removing a growing tumour is important, because the inside of the skull is a fixed space. If a tumour gets bigger, it takes up more space and increases the pressure inside your child’s head. The increased pressure causes some of the symptoms of brain tumours.

Very low grade (slow growing) tumours might not develop quickly enough to cause these problems. Very slow growing tumours may not need surgery straight away, or even at all. Your child will have regular scans to make sure there are no problems.

Removing part of the tumour

Even if your child’s surgeon doesn't think they can completely remove your brain tumour, they are still likely to try and remove as much as possible. This is called subtotal resection (or debulking). It helps to slow the growth of the tumour and relieves symptoms.

The part of the tumour left might be treated with radiotherapy or chemotherapy.

Radiotherapy

Radiotherapy uses high energy waves to treat brain tumours.

Your child might have radiotherapy on its own, or after surgery. It’s uncommon for children under 3 to have radiotherapy to the brain and spine. This is because they are at higher risk of developing long term side effects if they have it before the age of 3. Your child might have radiotherapy to:

  • the area where the tumour was removed (tumour bed)
  • the tumour (or tumour bed) and a surrounding area of healthy brain tissue
  • the whole brain, this area is called a clear margin
  • the whole brain and spinal cord

Proton beam therapy

Proton beam therapy is a type of radiotherapy. It uses protons rather than high-energy x-rays to kill cancer cells. Protons are tiny parts of atoms. They work differently from x-rays in that they produce a sudden burst of energy when they stop, which stays inside the tumour. The aim is there is less damage to healthy cells around the tumour.

Your child’s specialist will talk with you if they think proton therapy might be beneficial for your child.

In 2009, the UK government made the decision to set up a National NHS Proton Beam Therapy Service. One therapy centre is open at The Christie hospital in Manchester. The other will be at University College London hospital. At the moment, some children needing this service will need to travel abroad for it.

Chemotherapy

Chemotherapy uses anti cancer (cytotoxic) drugs to destroy cancer cells. The drugs circulate throughout the body in the bloodstream. Your child might have chemotherapy on its own or with radiotherapy.

Chemotherapy for brain tumours can be:

  • tablets or capsules
  • an injection into the bloodstream (intravenous chemotherapy)
  • an injection into the fluid around the brain and spinal cord (intrathecal chemotherapy)
  • chemotherapy implants in the area where the tumour was removed – this is a rare treatment for children

Chemotherapy can work well for some types of brain tumour. But it can be difficult to treat some brain tumours with chemotherapy drugs because the brain is protected by the blood brain barrier. This is a natural filter and only lets certain substances through from the blood to the brain tissues.

Some chemotherapy drugs cannot cross the blood brain barrier. So, these drugs might be given into the fluid surrounding the brain and spinal cord. This is called intrathecal chemotherapy.

Doctors sometimes use chemotherapy to slow the growth of a tumour until young children are old enough for radiotherapy.

Clinical trials to improve treatment

Doctors and researchers are interested in making existing treatments better and want to develop new treatments. They do this by researching through clinical trials.

Many children have treatment for brain tumours as part of a clinical trial.

Last reviewed: 
13 Mar 2019
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