If your brain tumour can't be cured

Finding out that your brain tumour can’t be cured is distressing and can be a shock. It’s common to feel uncertain and anxious. It's normal not to be able to think about anything else.

There is support available to help you cope with the emotional, practical and physical issues caused by your brain tumour.

Some brain tumours grow very slowly (low grade) and cannot be cured. Depending on your age at diagnosis, the tumour may eventually cause your death. Or you may live a full life and die from something else. It will depend on your tumour type, where it is in the brain, and how it responds to treatment. 

Brain tumours can also be fast growing (high grade) and come back despite treatment. 

Treatment

Even if the brain tumour can't be cured, treatment might shrink your tumour and slow its growth. It can control your symptoms for some time and make you feel better. 

You might have surgery, radiotherapy, or chemotherapy. Or a combination of these treatments.

Getting a second opinion

Not everyone wants to have a second opinion from a different specialist. But some people might want to do this. It might be important for you and your family to feel that you have explored every option. Asking the opinion of another specialist may reassure you that everything has been done. 

The best way to ask for a second opinion is to ask your GP to refer you to another specialist. It is common for people to ask for second opinions. So your specialist won't mind you getting another opinion.  

Your specialist can send copies of all your test results and scans to another specialist. 

Looking for other treatments

You might find information about a treatment that you think is new, or could help you. You should take that information to your specialist. You can talk it through with them and find out if it is relevant for your situation. 

Some people might consider going abroad for treatment. It is important to discuss this with your doctor. It might be that a particular treatment is not suitable for you, or it might be available in the UK. 

Treatment overseas can be a big commitment. It can be expensive and involve time away from home and family and friends.

You can also consider joining a clinical trial. Go to Cancer Research UK’s clinical trials database if you are looking for a trial for brain and spinal cord tumours in the UK. You need to talk to your specialist if there are any trials that you think you might be able to take part in.

What happens at the end of your life

What happens at the end depends on how your brain tumour develops. Talk to your doctor or specialist nurse. They know your situation and might be able to give you specific information about what might happen. 

When brain tumours grow very large, the pressure inside your head increases, causing drowsiness. At first it might be possible to control this by increasing your steroid dose. Eventually the steroids will not be able to reduce the swelling any further.

You might get headaches and sickness. These can often be controlled with painkillers and anti sickness medicine. But you might get drowsier (somnolence) and will need to sleep more often. This can come on quite suddenly or slowly. At this stage, you may be able to lead a relatively normal life. But you might sleep more than you used to. 

Some people who have never had seizures (fits), might have some in the last few weeks of their life. Your doctor can start you on anti epileptic medication if this happens. 

Gradually you will need to sleep more and more and it may become more difficult to wake you. Eventually, most people slip into unconsciousness. You might be unconscious for a few days or weeks before you die. During this time you will need nursing care to make you comfortable. 

Choosing where to die

There are many options to consider when thinking about where you wish to spend the last weeks of your life. 

Hospital 

You might feel safer being in hospital. You may want the reassurance of knowing there are doctors and nurses nearby. 

Hospice 

Hospices look after people who are no longer having active treatment aimed at curing them. But you have treatment to control symptoms and keep you comfortable. There is 24 hour nursing care. A local GP and palliative care specialist provide the medical care. Hospices aim to keep people well for as long as possible. 

You can go into a hospice for a few days if you have a problem that they can help sort out. Then you can go home again. You can also use the hospice for respite care, to give your family a break if they become very tired looking after you. Many hospices also have day centres. 

Home 

If you choose, you can be looked after at home. You might be able to be at home all of the time. It depends on your circumstances. For example, the layout of your house and if there is anyone to help look after you. It might need a bit of thought and planning. 

Help with making plans

It can be helpful to talk through your options with your closest family or friends while you are able. This can help to avoid misunderstanding about what everyone thinks is best. Talking through the options will help everyone to make plans that you all agree on.

You might feel happier knowing that you have made the best decisions for all of you. It can be a very heavy burden on families to decide what to do during a crisis. It might be easier if they know what you would have wanted. 

Caring for someone who is dying can be a huge emotional and physical challenge. It's important that you get all the help and support you need.