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If your brain tumour comes back

Some brain tumours are cured with the first round of treatment. But unfortunately, it’s common for brain tumours to come back some time after they were first treated. When a cancer comes back it’s called recurrence.

It can be a great shock to find out that your brain tumour has come back. You might feel upset, frightened and confused. Some people find that it helps to know what to expect.

Your treatment team might talk to you about having further treatment. Even if it isn’t possible to cure your cancer, more treatment can help to: 

  • keep the cancer under control for a while
  • help to control the symptoms

Symptoms

If your brain tumour comes back after treatment or starts to grow again, you are likely to have similar symptoms to when you were diagnosed. Symptoms might include:

  • headaches
  • seizures (fits)
  • feeling or being sick
  • drowsiness or loss of consciousness
  • problems with your eyes

But having symptoms does not necessarily mean that the tumour is back or is starting to grow again. Other causes of symptoms include:

Early delayed effects are common after brain radiotherapy. It usually starts from a few weeks to 3 months after you finish treatment. You might have a collection of symptoms that include:

  • loss of appetite
  • sleepiness
  • lack of energy
  • worsening of your old symptoms

You usually have steroids to help with the symptoms.

Infection, high blood pressure and dehydration can increase the pressure inside your brain (intracranial pressure). Raised intracranial pressure might cause headaches and feeling or being sick.

Drink plenty of fluids to stop you from getting dehydrated. And let your doctor know if you think you have an infection or high blood pressure. They can give you treatment.

Talk to your doctor or specialist nurse if you are worried about any symptoms. They can give you treatment and might ask you to have tests to look for signs of the tumour growing or coming back.

Deciding on treatment

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

The treatment you have depends on:

  • your type of brain tumour
  • where the tumour is
  • the treatment you have already had
  • your general health

Your MDT will discuss your treatment, its benefits and the possible side effects with you.

Some hospitals have specialist brain tumour nurses. They go to the MDT meetings. You usually see the nurses more regularly than your cancer specialist. They can answer your questions and support you.

Treatment

Treatment for a brain tumour that has come back might include:

  • surgery
  • radiotherapy
  • chemotherapy
  • drugs to control your symptoms
  • clinical trials

Surgery

It might be possible for you to have surgery again to try to remove as much as possible of the tumour. But surgery doesn’t help everyone with a recurrent brain tumour. For example, it might not be worth putting you through brain surgery again if:

  • there are several new brain tumours
  • the tumour is growing quite quickly or is likely to grow back very quickly afterwards

There are different types of surgery that you can have. Craniotomy is the most common type of surgery for brain tumours.

Radiotherapy

Radiotherapy uses high energy x-rays to destroy cancer cells. You might have it if:​

  • you haven’t had radiotherapy to the brain before, or you have had it a long time ago
  • the tumour is in a different part of the brain

You usually have a type of radiotherapy called external beam radiotherapy. External beam radiotherapy destroys cancer cells by using radiation aimed at the cancer from a machine.

You may also be able to have stereotactic radiotherapy. It targets the radiation very precisely at the tumour. You are most likely to have it for small tumours.

Chemotherapy

Chemotherapy uses cytotoxic drugs to destroy cancer cells. The drugs circulate throughout the body in your bloodstream. It is a common treatment for a brain tumour that has come back.

Common chemotherapy treatments include:

  • temozolomide
  • carmustine (BCNU)
  • a combination of drugs called PCV

Drugs to control your symptoms

You might have medicines to help with the symptoms of a brain tumour. This includes:

  • anti epileptic drugs to control seizures (fits)
  • steroids do reduce the swelling inside your brain
  • painkillers

These treatments won’t reduce the size of the tumour but can help you to feel better.

Clinical trials

Researchers want to improve treatments for people with a brain tumour. Talk to your doctor if you are interested in taking part in a clinical trial. They can check whether there is a suitable trial for you.

You can also search the Cancer Research UK clinical trials database for trials happening in the UK.

Support for you and your family

Finding out that your brain tumour has come back can be shocking and upsetting. Some people find that it helps to talk about how they are feeling.

You can also talk to the Cancer Research UK nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.
Last reviewed: 
08 Nov 2019
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    NHS England, 2018

  • NHS Standard contract for stereotactic radiosurgery and stereotactic radiotherapy (intracranial) (All ages)
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    Journal of Neuro-Oncology, 2016. Vol 130, Issue 3, Pages 591-599

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    National Institute for Health and Care Excellence (NICE), 2018  

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    London Cancer Brain and Spine Pathway Board, 2014

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