Brain and spine (CNS) tumours

The brain is responsible for just about everything you do, think and feel. The spinal cord runs down your back and tells the brain what’s going on in your body. Together, they make up the central nervous system or ‘CNS’ for short.

CNS cancer happens when the brain and spine grow extra cells. They turn into a lump, called a tumour. There are lots of different types of brain tumours. Most of the names look quite long and difficult but your doctor will be able to explain what yours means.

What does it feel like?

You might get headaches or feel sick, especially when you wake up in the morning. You might also find it difficult to see or hear things clearly, experience ‘fits’, feel unsteady when walking, have weakness in your arms or legs, have trouble going to the toilet or behave differently from usual, like getting annoyed more easily. What you feel depends on where your tumour is.

How are they diagnosed?

Being ‘diagnosed’ means that the doctor has confirmed what your condition is. They usually do this with some tests. Scans will let specialists get a better look at your tumour. They are like big cameras that take photos of your brain! You will not feel anything so there is no need to worry about anything, other than keeping still! 

Doctors may also need to look at your eyes, take blood samples, and test your hearing and reactions. 

Will I need medicine and treatment?

There are different sorts of treatment to help you get better.

  • If it is safe, you may need to have surgery to take out the tumour. This operation might sound scary, but you will not be able to feel anything and should speak to your doctor about any worries.
  • Radiotherapy uses invisible laser beams to destroy the cancer. You might have this instead of surgery, or if it hasn’t been possible to remove all the tumour. Some children with brain tumours go to another country to have a special form of radiotherapy called proton beam therapy. Your specialist will tell you whether you need to do this. 
  • Chemotherapy is a special medicine that kills the cancer cells. 
  • Steroid drugs help the swelling around brain tumours and make you feel better. You may also be given other drugs to stop different side effects.

What will treatment feel like?

Chemotherapy might make you feel more tired and poorly than usual. It can make you feel a bit sick, change how much you need the toilet and you might lose your hair while you’re on treatment. Radiotherapy can also make you feel unwell and can make your skin a bit red and sore where you are being treated. 

Steroid drugs can change the way you feel emotionally and you may get some mood swings, as well as gaining some weight. 

This all might sound a bit scary, but it is very normal and part of helping you get better.

If you are worried, talk to your nurse or doctor, or a family member.

What will happen afterwards?

When your treatment has finished, you will still need to keep seeing a doctor to make sure your cancer is staying away and that your body continues to work properly after the treatment. Sometimes, people will need to continue having help, but lots of people get better without any problems.

Will I get ill again?

It will depend on lots of different things. Some people will carry on feeling poorly, or have problems with walking, speaking and understanding. All these things can be helped by having therapy which concentrates on making you better.

The doctor will make sure you have all the help you need and is always there to talk about what is happening and answer any questions.

Updated April 2018, next review due 2021.