Coping and recovery after treatment for a brain tumour

Your feelings

Finding out you have a brain tumour can feel overwhelming, as though things are out of your control. You may feel shocked and upset. You might also feel:

• numb

• frightened and uncertain

• confused

• angry and resentful

• guilty

• sad

You may have some or all of these feelings. Or you might feel totally different. Everyone reacts in their own way. One day you might feel positive and able to cope but the next day you may feel the exact opposite. This is natural. Sometimes it's hard to take in the fact that you have a brain tumour at all.

Experiencing different feelings is a natural part of coming to terms with the disease. All sorts of feelings are likely to come and go.

Read more about cancer and your emotions

Counselling

Some people find that counselling can help them cope. Counselling can help to reduce stress and improve your quality of life. It can be difficult to access a counsellor through the NHS. It's worth asking your GP or your treatment team about the services available in your area.

Find out about counselling

Finding out about your prognosis

There are lots of different types of brain tumours. The likely outlook (prognosis) varies greatly, depending on the tumour type and how well you are. Some brain tumours grow quickly and are likely to come back despite treatment. But many brain tumours are curable or can be controlled for many years. 

Not everyone wants to know if their brain tumour isn't curable and how long they are likely to live (their prognosis). Reading information about survival can be difficult. You can save it to read another time when you feel ready. And it’s okay if you don’t want to read this information at all.

Survival statistics can be useful, but they cannot tell you exactly what will happen to you. The best person to do this is your doctor. Talk to them or to your clinical nurse specialist if you want to know about your likely prognosis. 

Read about survival for brain tumours

Recovering after treatment

Having treatment for a brain tumour is often life changing. Some people make a good recovery and can go back to doing most of the things they did before. Everyone takes a different amount of time to recover. The changes you have can be due to your treatment or the type of brain tumour.

Helping yourself

You are more able to cope and make decisions if you have information about your tumour type and its treatment. Information helps you to know what to expect.

Taking in information can be difficult at first, especially if you have just been diagnosed. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask and help remember the answers.

Ask your doctors and nurses to explain things again if you need them to.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

Problems you might have after treatment

The problems you have after treatment depend on where in your brain the tumour was. In time, another area of your brain can learn to take over some of the functions that were affected by your tumour, or its treatment. You may or may not get completely back to how you were before your brain tumour. But help is available for you.

The problems you might have include:

• weakness on one side of your body

• difficulty walking or moving

• difficulty with speech or understanding

• seizures (fits)

• problems with your vision and hearing

• memory problems

Feeling very tired (fatigue)

Feeling very tired is common when you are recovering from treatment for a brain tumour. You might feel sleepy or find it hard to concentrate. Small everyday tasks, such as brushing your teeth, can wear you out.

Everyone is different. There might be certain times when you feel tired. But some people can feel very tired all the time.

Read more about tiredness with cancer (fatigue)

Personality changes

You might have personality changes caused by the tumour itself or its treatment. These can be difficult to cope with and might affect how you feel about yourself. Personality changes can include:

• irritability or aggression

• confusion

• anxiety

• mood swings

• lack of interest in what you do daily

• depression

Some people are aware of the changes happening and others aren't. Speak to your doctor or specialist nurse if you or your family notice changes in your personality. They can do some tests to find out what is causing the changes and give you some medicines to help.

Unfortunately, some people do not get better and need care and support for the rest of their lives.

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

Support from healthcare professionals

There are various healthcare professionals who can help you recover from a brain tumour.

Social workers

Social workers can help to support you with your situation at home. They can arrange

• home helps to help with shopping or housework

• home care assistants for washing and dressing

• meals on wheels

• respite care

Your social worker can also help with money matters by checking that you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

You can contact a social worker yourself by getting in touch with your local social services office. Or you can ask your hospital nurse or your GP to refer you.

Other healthcare professionals and support services

There are other healthcare professionals that your doctor or specialist nurse may be able to refer you to. Don't be afraid to ask for this if it is not arranged automatically.

These services include:

• a physiotherapist to help you with your mobility

• an occupational therapist to see what help you need with everyday activities such as dressing, reading and activities to stimulate the brain. They can also help you get equipment to help with daily tasks

• speech and language therapist to help if you have problems with your speech. Or help if you find it hard to understand written information or what people say. They also help if you have problems with swallowing, eating, and drinking

• a pharmacist who can help with your medicines and dosette boxes

• dietitians to help with your diet

Going back to work

Some people make a good recovery from their brain tumour. Others will have some long term side effects. It isn't possible to tell beforehand how things will work out. 

Your recovery depends on:

• the type of tumour you have

• how big the tumour is and where it is

• the treatment you had

• your particular job 

Some people have difficulty concentrating or remembering details after having treatment for a brain tumour. You might not be able to go back to the same level you were before your diagnosis if you had a job where your mental skills and abilities were very important. This can be very difficult to accept and adjust to. 

You might not be able to go back to your job straight away if you operate heavy machinery. You should talk to your occupational health department if you have one. If not, talk to your manager. 

If necessary, some employers can arrange for you to take on another role until you are better. Ask about this possibility if it is not offered. You might be able to go back to work part time. You then may be able to go back to your regular hours once you have your strength back.

It might be helpful to contact a benefits advisor at your local hospital if you can't go back to the job you did before. Or contact your local Citizens Advice Bureau.

Go to the Citizens Advice website

Financial and practical support

Practical things you and your family might need to cope with include:

• money matters

• financial support, such as benefits, sick pay, and grants

• work issues

• childcare

Talk to your doctor or specialist nurse to find out who can help. Getting help early with these things can mean that they don’t become a big issue later.

Find out more about coping practically

Talking to other people

Talking to your friends and relatives about your brain tumour can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone outside your own friends and family. For example your specialist nurse, or other people in a similar situation to you. You could join a support group or contact one of the brain tumour charities.

Find out about brain tumour organisations that may help you cope

How to support someone with a brain tumour

Supporting or caring for someone with a brain tumour can be challenging. You might not know what to say or how to deal with your loved one's emotions. Every person with a brain tumour has a different experience so try not to assume how they might be feeling. You can ask them how they are feeling. But remember that they might not want to talk or think about their tumour all of the time.

It's also very important to take time to look after yourself, both physically and emotionally. Get some support for yourself if you are finding it hard to cope.

We have more information about how to support someone with cancer and how to take care of yourself

Cancer Chat

You might find it helpful to talk to other people affected by a brain tumour. Cancer Chat is our free online discussion forum for people affected by cancer. It is a safe space to talk to other people in similar situations, and find information and support.

Go to Cancer Chat

Cancer Research UK nurses

Contact our cancer information nurses