If your child’s brain tumour comes back

Some brain tumours are completely cured with the first treatment. Others might not go away with treatment. Or some might come back at some time after they were first treated.

When a cancer comes back it can be a great shock to everyone. It is important to get the support you need at this time.

Can my child have more treatment?

A brain tumour that does not go away with treatment is called a refractory brain tumour. A recurrent (or relapsed) brain tumour is one that comes back after treatment.

It can be more difficult to control recurrent or refractory brain tumours. But, there are treatments available. Researchers are looking into how to improve treatment for children living with a brain tumour that hasn’t gone away, or has come back.

Even if it is not possible to cure your child’s tumour, treatment can:

• keep the growth under control for a while
• help to control the symptoms of the tumour

Deciding on treatment

Your child’s multi disciplinary team (MDT) will develop a treatment plan just for your child. The plan will depend on:

• the type of tumour your child has
• the size of the tumour
• the treatment they have already had
• whether the tumour has spread within the brain or spinal cord
• how fast it is growing
• your child’s general health
• the wishes of your child and you

Your child might have surgery, radiotherapy or chemotherapy. They might have a combination of these treatments.

There might also be a clinical trial that they can join. The trial might be looking at new treatments or the best way to use the treatments we already have.

Surgery

It might be possible for your child to have surgery again, to try to remove as much as possible of the tumour.

In some situations, surgery is not possible. For example, if there are several new brain tumours or if the tumour is now growing quickly. If the tumour is likely to grow back very quickly after surgery it may not be best for your child to go through further brain surgery.

Radiotherapy

Your child might have radiotherapy if:​

• they have not had radiotherapy before – for example if they were under 3 at the time of their first treatment
• the tumour is in a different part of the brain than the first time
• it's more than a couple of years since the original tumour

Sometimes it’s possible to have stereotactic radiotherapy to areas that have already had radiotherapy. This is a type of targeted radiotherapy. Stereotactic radiotherapy gives a strong dose of radiation to the area, while limiting the amount to the surrounding brain tissue.

Chemotherapy

Your child might have chemotherapy. Even if they have had chemotherapy before, there may be another drug or combination of drugs that they can have.

Clinical trials

Researchers want to improve treatments for children who have brain tumours that haven’t gone away or have come back.

Doctors are looking at the best way to use the treatments we already have. And there are UK clinical trials looking at new targeted cancer drugs for children in this situation.

Researchers are also very interested in reducing side effects of treatment. They want to make sure children going through treatment have the best quality of life as possible.

How to join a clinical trial

The best person to speak to about your child joining a clinical trial is their hospital consultant. There are strict entry requirements to join a trial, so its best to discuss this with your child’s doctor. They’ll know if your child is suitable.

There might also be a research nurse at their primary treatment centre you can talk to. You can also chat through the options with your child’s clinical nurse specialist.

Support

Finding out your child’s brain tumour has come back, or has continued to grow, is devastating. Some people find that talking about how they’re feeling helps. It’s okay to ask for help.

There is lots of help and support for you and your family. Being with your child while they’re having treatment in hospital for an extended amount of time can be very hard. It’s both emotionally and physically hard for you and all the family. It’s normal to be anxious and worry about what is happening or might happen in the future. Emotional and psychological support is available in most children’s cancer units or through community nursing teams. This support is for children, parents or carers.

Try and have time out for yourself. This can feel difficult for many reasons, including not wanting to leave your child alone in hospital. It’s important that you have some rest too and you look after yourself. 

Telling other people

How much you tell other family members or friends about your child’s treatment is up to you. The hospital staff are not able to share any medical information with other family and friends without your permission.

Updating lots of different people can be tiring. You might feel frustrated or upset going over the same information. Or you might worry about upsetting those you are telling. It can help to give the information out once to one person. They can then tell the others for you.

Other families have found updating a blog or a private group on social media helpful. This way you can give the update when is best for you. You also only have to do it once. You can get your child involved in this. They can take pictures, write or make videos about their own experiences if it’s appropriate.

Some families find it hard to talk to one another about cancer. They may be frightened about the emotions this could bring up. Or your friends and relatives may not want to talk to you about your child’s cancer because they worry that you won't be able to cope with talking about your situation. They may not want to upset you. This can make you worry even more, as well as strain your relationships. But it is important to know that even if your family aren't talking about your child’s illness, they are probably constantly thinking about it and wanting to find ways to help.

What next?

We have information about where to get help and support for you and your family.