Radiotherapy and proton beam treatment for children’s brain tumours

Radiotherapy means the use of radiation, usually x-rays, to treat cancer cells. Proton beam treatment uses protons, rather than x-rays, to treat cancer cells.

Your child might have radiotherapy to:

• the area where the tumour was (if it’s been removed with surgery)

• the tumour itself

• to the whole brain or spinal cord

Different types of radiotherapy

External radiotherapy uses specialised radiotherapy machines to aim radiation beams at a cancer. This is the type of radiotherapy most children have for a brain tumour.

The radiation beams destroy the cancer cells. There are many different types of external radiotherapy. The best one to use depends on the type of cancer and where the tumour is in the in the body.

The most common type of radiotherapy machine is called a linear accelerator machine (LINAC). This uses electricity to create the radiotherapy beams.

Intensity modulated radiotherapy (IMRT)

Many children have intensity modulated radiotherapy (IMRT). IMRT is a type of conformal radiotherapy. Conformal radiotherapy shapes the radiation beams to closely fit the area of the cancer.

Your child can have IMRT on a standard radiotherapy machine, called a linear accelerator (LINAC).

The LINAC has a device called a multi leaf collimator. The multi leaf collimator is made up of thin leaves of lead which can move independently.

They can form shapes that fit precisely around the treatment area. The lead leaves can move while the machine moves around the child. This shapes the beam of radiation to the tumour as the machine rotates.

This means that the tumour receives a very high dose of radiotherapy and normal healthy cells nearby receives a much lower dose.

Each radiotherapy beam is divided into many small beamlets that can vary their intensity. This allows different doses of radiation to be given across the tumour.

IMRT can also create a U shaped (concave) area at the edge of the radiotherapy field. This avoids high radiation doses to structures that radiotherapy might otherwise damage. So IMRT can reduce the risk of long term side effects.

Travelling to radiotherapy appointments

You and your child might have to travel a long way each day for their radiotherapy, depending on where your nearest cancer centre is. This can make you and your child very tired, especially I they have side effects from the treatment.

You can ask the therapy radiographers for an appointment time that you think would better suit your child. They will do their best, but some departments might be very busy. Some radiotherapy departments are open from 7am till 9pm.

Car parking can be difficult at hospitals. You can ask the radiotherapy staff if they can give you a hospital parking permit for free parking or advice on discounted parking. They may be able to give you tips on free places to park nearby.

The radiotherapy staff may be able to arrange transport if you and your child have no other way to get to the hospital. Your child’s radiotherapy doctor would have to agree. This is because it is only for people that would struggle using public transport and have no access to a car. 

Some people are able to claim back a refund for healthcare travel costs. This is based on the type of appointment and whether you claim certain benefits. Ask the radiotherapy staff for more information about this.

Some hospitals have their own drivers and local charities might offer hospital transport. So do ask if any help is available in your area.

School

Some children remain well enough during their radiotherapy treatment to keep going to school. Having radiotherapy doesn’t make them radioactive. It's safe for them to be with other people throughout their course of treatment. This includes pregnant women, their siblings and school friends.

Your child’s clinical nurse specialist can liaise with their school to talk about the treatment your child is having and how your child might feel. They can help support and educate the school to better support your child.

Side effects

There are immediate and longer term side effects of radiotherapy.

Immediate aide effects tend to start a few days after the radiotherapy begins. They gradually get worse during the treatment and for a couple of weeks after the treatment ends. But they usually begin to improve after around 2 weeks or so.

Long term side effects might develop weeks, months or years after treatment has ended.

Every child is different, and the side effects vary. They might not have all of the side effects. Some children have only mild side effects, but for others the side effects are more severe.

Radiotherapy side effects will also depend on the type of radiotherapy your child has. As well as the area in the brain that is treated.

The doctors and nurses looking after your child do everything possible to prevent and treat any side effects that come up.

Immediate side effects

Some of these can include:

Pressure inside the skull

This is also known as raised intracranial pressure (ICP). It can happen due to inflammation of the tissue that has had radiotherapy. Symptoms might include:

• a headache that is usually there when waking or if it wakes your child from their sleep

• being sick

• changes to their vision

• changes to their behaviour or moods

• seizures (fits)

• problems with their strength, balance or coordination

• problems with their posture

• abnormal pupils

• not being alert or able to wake up

When your child first starts radiotherapy they’re usually an inpatient to monitor for this possible change. Your child would usually have and urgent CT scan and treatment is usually steroids to help reduce the inflammation if there are signs of this.  

Tiredness

Your child might feel very tired during radiotherapy treatment. It tends to get worse as the treatment goes on and then improves. Encourage your child to rest when they need to.

Various things can help your child to reduce tiredness and cope with it. Some research has shown that taking gentle exercise can give you more energy. There should be a physiotherapist at the hospital who can help. It's important to balance exercise with resting.

A rarer complication is somnolence syndrome or early delayed syndrome. This is extreme tiredness where children sleep nearly all the time. They might have other symptoms. For example, a worsening of their old symptoms or a poor appetite.

Somnolence usually starts 4 to 6 weeks after treatment has finished. Just when you they think they are getting over treatment, this can be challenging. But it passes in time.

Your child’s doctor might temporarily increase their dose of steroids to reduce somnolence syndrome.

Felling or being sick

Your child might feel sick at times. The team can give them some anti sickness medication.

Loss of appetite

Your child might lose their appetite while having treatment. Seeing a dietician and making a plan can help.

Try writing down what your child eats over a few days and when they feel like eating. There might be a pattern that you hadn’t noticed. If they are hungrier in the morning, focus on this time to offer them their favourite breakfast.

Skin soreness

It’s likely your child will have an area of redness and possibly sore skin in the treatment area. Creams can help soothe the area. Talk to your child’s doctor about this.

Hair loss

Hair loss only happens in the area of the head that is being treated. Your child usually only loses patches of hair where the radiation beams entered and left.

Headaches

Your child might complain of headaches and be more sensitive to light and noise. Some children might not be able to communicate this, but as the parent or carer you’ll know they aren’t feeling very well due to their change in behaviour and mood.

It’s important to let the team know if they are getting headaches or if something is not quite right so they can give painkillers to help. Also, so they can monitor in case it is a sign of raised intracranial pressure in the skull.  

Dry mouth

The salivary glands (where spit (saliva) is made) might receive some radiotherapy during treatment. This can cause them not to work properly and means that your child might get a dry mouth. It can make eating and chewing a problem for your child.

Let the nurse know if they are off their food or complaining their mouth is dry. The doctor can prescribe lozenges, gels or sprays to help with this.