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 most of their treatment in this specialist centre. 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. This is usually carried out by the children’s community nursing service, but depends on your area.

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
whether the tumour cells have certain changes and mutations

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 (paediatric 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 (neuro pathologist)
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 – to help with rehabilitation
social worker
play specialist – use therapeutic and play activities to help your child cope when in hospital
occupational therapist - helping your child with their everyday activities
dietitian
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, these treatments aren't suitable straight away. These children might 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 (gross total resection)
remove most of the tumour (subtotal resection or debulking)
take a sample of tumour so a pathologist can look at it down a microscope (biopsy)
drain a build up of fluid in the brain (hydrocephalus)

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. These types of 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 their 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.

Your child might have radiotherapy to the part of the tumour that's left behind. Or they might have chemotherapy.

Radiotherapy

Radiotherapy uses radiation, usually x-rays, 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
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. They produce a sudden burst of energy when they stop, which stays inside the tumour. The aim is that there is less damage to healthy cells around the tumour.

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

There are 2 therapy centres open in the UK:

The Christie Hospital in Manchester
University College London Hospital

University College London Hospital opened in 2021 so are gradually opening their service to the rest of the UK.

At the moment, children needing this service will need to travel to one of these hospitals or abroad.

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 filled spaces in the brain (intraventricular 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 tumours. But it can be difficult to treat some brain tumours with chemotherapy drugs. This is because the blood brain barrier protects the brain. This is a natural filter, so only lets certain substances pass through from the blood to the brain tissues.

Some children have intrathecal and intraventricular chemotherapy. This means having chemotherapy as an injection into the fluid around the brain and spinal cord. This is because some chemotherapy drugs are unable to cross the blood brain barrier.

Doctors sometimes use chemotherapy to slow the growth of a tumour. This is so that young children can wait until they're old enough for radiotherapy.

Clinical trials to improve treatment

Doctors and researchers want to improve existing treatments and develop new treatments. They do this through clinical trials.

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