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If your brain tumour can't be cured

Read about what happens when your brain tumour can't be cured.

Brain tumours can be low grade (slow growing) or high grade (fast growing). 

Some slow growing tumours cannot be cured but grow very slowly. Depending on the age you were diagnosed, the tumour may eventually cause your death. Or you may live a full life and die from something else. It will depend on the type of tumour you have, where in the brain the tumour is, and how it responds to treatment. 

Other people have a fast growing tumour that responds well to treatment. But it can come back some time later. 

Treatments

Treatment might shrink your tumour and slow it's growth. Even if your brain tumour can't be cured, treatment might control your symptoms for some time. 

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

Second opinions

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 help you to feel reassured that the has been done. 

The best way to go about this is to ask your own specialist to refer you to another specialist. Your specialist will not mind you asking. It is not unusual. 

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

Finding information yourself

You might find information about a treatment that you think is new, or could be offered to you. You should take the 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.

What happens at the end

The symptoms you might get depend 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 more drowsy and will need to sleep more often. This can come on quite 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 a seizure (fit) might have one 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 decision that is best for all of you. It can be a very heavy burden on families to decide what to do for the best at a crisis point. It might be easier if they know what you would have wanted. 

Information and help

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