If your brain tumour cannot be cured
This page talks about what happens if your brain tumour isn't curable. There is information about
If your brain tumour can't be cured
Treatment may shrink the tumour and slow its growth. In some situations, your specialist may think that a long course of radiotherapy or major surgery may not help you, or may even make matters worse. If this is the case, your specialist will talk this through with you. You can still have treatment to help to control your symptoms. If you want a second opinion, you should go ahead. The best way is to ask your own specialist to refer you to another expert.
What happens at the end with an incurable brain tumour?
How the tumour develops will be different in every case. To find out more, it is a good idea to talk it over with your doctor and specialist nurse. They will be familiar with the medical details of your tumour and how it could affect you as it grows.
Once a brain tumour reaches a critical size, the increased pressure inside the head begins to cause headaches, sickness and drowsiness. At first, it will be possible to control these symptoms by increasing your steroids. But eventually, the steroids will not be able to reduce the swelling any further. You can have painkillers, and medicines to control sickness. But you may find you become increasingly drowsy. At this stage, many people can still carry on with a relatively normal life. But as time goes on, you may find you are sleeping more and more. Gradually, it may become more difficult to wake you. Eventually most people slip into unconsciousness. You may be unconscious for days or weeks before you die.
There are many different types of brain tumours. And each of those can come in faster growing or more slowly growing forms. So there is no single situation we can describe here.
Some people have slowly growing brain tumours that cannot be cured. But with a very slow growing tumour, you may live for many years before the tumour causes any serious effects. Depending on your age when you are diagnosed, the tumour may eventually cause your death. Or you may live a full life and die from something else. It depends on the type of tumour, where it is in the brain and how well it responds to treatment.
Other people have fast growing tumours that may respond well to treatment, but then come back.
Sometimes brain tumours are diagnosed at an advanced stage. The tumour may be too advanced to be cured with treatment. But treatment may shrink the tumour, and so slow down its progress.
In some situations, your specialist may think that a long course of radiotherapy or major surgery may not help you, or may even make matters worse. If this is the case, your specialist will talk this through with you. Depending on the type of brain tumour you have, if you are too ill to be up and about and looking after yourself when you are diagnosed, you are less likely to be helped by intensive radiotherapy. It may even increase your problems so that you can do less for yourself after the treatment than before.
Similarly, with surgery, you have to be fit enough to be able to make a good recovery from your operation. The more ill you are, the more likely you are to spend longer in hospital getting over your treatment. If your specialist suggests that intensive treatment may not help you, it is because your specialist wants to help you to make the most of the time you have. And they may be reluctant to give you treatment that overall may make matters worse for you and your family.
Of course you can still have other treatment to help to control your symptoms and keep you as well as possible for as long as possible. A shorter course of radiotherapy may slow down or even shrink your tumour, helping you to feel better for longer.
Not everyone wants to get a second opinion. But if you do, then you should go ahead. It may be important for you and your family to feel that you have explored every option. Asking the opinion of another expert may help you to feel reassured that this has been done. All brain surgeons are specialists, and so are cancer doctors (oncologists). But some may have a particular interest in treating certain types of tumours. Or tumours in particular parts of the brain.
The best way to go about this is to ask your own specialist to refer you to another specialist for a second opinion. Your specialist will not mind you asking. It will not surprise them, particularly if you have a tumour that they have said can't be cured. They will understand why you want to have a second opinion. They can send copies of all your test results and scan reports to the other specialist. You could ask your GP to talk to your specialist for you if you feel more comfortable about doing it that way.
If you have found information about a treatment you think is new, or that you think could be offered to you, it is always best to bring it to your specialist. You can then talk it through and find out how relevant it is to your own situation. If there is a lot of material, it may be better to send it to your specialist ahead of your appointment date, so that they have time to go through it.
Some people think they may be able to get better treatment abroad. Often, this is because of stories in the papers or on the internet. It really is best to talk these things through with your specialist too. Often press reports are misleading, or just plain wrong. The treatment may not be for your type of tumour. Or it may be available in the UK after all.
You need to think about going overseas for treatment carefully - talk it over with your family and your doctors. Being treated overseas is a big commitment - expensive in time and quality of life as well as financially.
It is very understandable that people want to ask this question. Unfortunately, it is a very difficult question to answer. How the tumour develops will be different in every case and so it is hard to generalise. We have tried to give you as much information as we can, but brain tumours will have different symptoms depending on where they are in your brain. To find out more, it is a good idea to talk it over with your doctor and specialist nurse. They will be familiar with the medical details of your tumour and may be able to talk through how it could affect you as it grows.
There is a set of symptoms that is common to most growing brain tumours. Once a brain tumour reaches a critical size, and cannot be slowed down with treatment, the increased pressure inside the head begins to cause headaches, sickness and drowsiness.
At first, it will be possible to control these symptoms by increasing your steroid dose. But eventually, the steroids will not be able to reduce the swelling any further. You can have painkillers and medicines to control sickness. But you may find that you become increasingly drowsy. This often comes on slowly. You or your relatives may notice you are sleeping a bit more than usual. This can carry on for quite a time. At this stage, many people can carry on with a relatively normal life, even though they may be drowsy at times and need more sleep than they used to.
As time goes on, you may find that you are sleeping more and more. Gradually, it may become more and more difficult to wake you. Eventually most people slip into unconsciousness. You may be unconscious for days or weeks before you die. During this time, you will need nursing care to keep you comfortable. There is information about what happens in the last few days of life in the dying with cancer section.
There are a few options for care to think about if you know you have a condition that you will die from. None of these are right or wrong. Only you can know what is right for you. The main options are
It really is best to talk these options through with your closest family or friends while you are able. There may be misunderstandings about what everyone thinks is best. You may think your family wouldn’t want to look after you at home. Your family may think you hate the idea of hospice care. You could both be wrong and it will help everyone to make plans you are all agreed on.
You will feel happier knowing that you have made the decision that is best for all of you. And that you have made clear to the people closest to you what you do and don't want to happen. Your family will feel much safer about carrying out your wishes. It can be a very heavy burden on families to decide what to do for the best at a crisis point. Especially if they don’t really feel they know what you would have wanted.
You may feel safer being in hospital. You may want the reassurance of knowing that there are doctors and nurses nearby. If you need any painkillers or help during the night for example, it is all to hand.
Another option is a local hospice. Hospices look after people who are no longer having active treatment that is aimed at curing them. There are care assistants and nurses 24 hours a day. But usually, a palliative care specialist and a local GP provide day to day medical cover. Hospices aim to keep you as well as possible for as long as possible. You can come into the hospice for a few days if you have a particular problem that they can help sort out. Then you will go home again. You can also use the hospice for respite care - to give your family a break if they are getting tired from looking after you.
Many hospices have day centres. You can go once or twice a week. Usually, there is transport that collects you and brings you back. If you are at the hospice all day, you will have lunch and other refreshments while you are there. Going for the day gives your family a break. But it also gives you a change of scene and a chance to socialise with other people. Hospice staff are usually very flexible. If there is anything you have difficulty with at home, they may be able to help you while you are visiting the day unit. For example, it may be difficult to have a bath or wash your hair at home. If there is anything they can help you with, do ask. They will want to support you as much as possible.
You can be looked after at home if you would like. You may be able to be at home all the time. That depends on your circumstances - your home layout and who is available to help care for you. If there is nowhere to put a bed downstairs, but you only have a downstairs toilet for example, it might be difficult for you to manage. No problem is impossible to solve, however. It might just need a bit of thought and planning.
If you think you would like to be at home, then ask your specialist or GP to arrange for you to meet your local palliative care team. These may be called the symptom control team. They will be able to tell you about the services and equipment that are available to you. It is possible to arrange for nursing care once, twice or even three times a day. For a limited number of nights, you can get overnight nursing care in most areas. You can borrow all sorts of equipment from your local health authority or local social services team. This can include special beds, chemical toilets or commodes, bedpans, and wheelchairs. Together with your carers, you can plan for most situations in advance.
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