Brain tumour

A guide for patients and carers

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Going home and rehabilitation

What follow-up tests and treatment will I need?

Follow-up tests and treatment will be different for each individual but might involve further consultation with your oncologist, radiologist, neurosurgeon or other specialist.

You might have further scans to monitor your situation and assist your continuing treatment. You can discuss any concerns you might have about your follow-up tests and treatment with your doctors.

What if the tumour comes back?

If the tumour comes back, your symptoms are likely to be the same as before. The pattern is sometimes identical.

You will need another scan which will show if the tumour has gone, stayed the same, or grown. For some people, even if the tumour has grown, there might be a good treatment to stop any further growth. With malignant tumours, even if there is no sign of growth or signs of the tumour returning, your doctors will interpret your scan results with great caution. It might be that the scans look favourable for a long time but that the tumour eventually returns. Obviously, this depends on the particular type of tumour you have and you should discuss this with your doctors.

The treatment options for a recurring brain tumour are fundamentally the same as those for a first time tumour: craniotomy (surgery), radiotherapy and chemotherapy. The best treatment for you will depend on the particular type of tumour you have and the nature of the recurrence.

A recurrence of any of your symptoms does not necessarily mean the tumour has come back. There might be other reasons for the symptoms.

Would an earlier diagnosis have made a difference?

Modern scanning equipment is accurate enough, in some cases, to identify abnormalities or changes caused by a tumour before people would usually begin to experience any symptoms, or before they are detectable in an examination by a doctor. However, in practice, people are unlikely to see a doctor in these early stages.

Delays in diagnosis can be harmful. For example, parts of the brain surrounding the tumour might be compressed and permanently damaged. Therefore, if a brain tumour is suspected, it is best to start the process of tests, investigations and treatment as soon as possible. However, while this means not waiting for months, it does not mean that everything needs to be done on the same day. Unfortunately, some people do experience delays in starting their treatment.

Many brain tumours are diagnosed late because the first symptoms people experience are vague and do not necessarily indicate a serious problem.

Rehabilitation: physiotherapy, speech and language therapy, occupational therapy

Your tumour might have left you with physical disabilities or other problems. The aim of physiotherapy, speech and language therapy, and
occupational therapy is to minimise the effects of the brain tumour and to maximise the speed and extent of your recovery. Although progress
and recovery are not guaranteed, it is often possible to improve the quality of your life and gain relief from some of your symptoms.

Physiotherapy helps physical recovery and the recovery of movements (for example, walking).

Occupational Therapy helps redevelop the skills you need to perform everyday activities (for example, washing, cooking
and using equipment around the home).

Speech and Language Therapy helps the recovery of communication skills.

Tiredness

Tiredness is very common after any serious illness, especially if you have had surgery or are undergoing a course of radiotherapy. Additionally, tumours in certain parts of the brain can cause tiredness as a specific symptom.

You might find that you become exhausted even after commonplace activities like getting washed and dressed, going to the shops, watching television, or talking with friends. Taking regular breaks can help. Try to do this at least three times a day for around 20-30 minutes.

Listening to your favourite music can help, but try to avoid anything too stimulating like watching television or reading.

It can help to have a daily routine. Try to get up and go to bed at the same times each day. Plan some relaxation breaks during the day. If you have returned to work, you could talk to your employer about the possibility of being given time for some extra breaks during the working day.

Feelings and worries

Many people find it difficult coming to terms with being diagnosed with a brain tumour. You might feel depressed, tearful, angry or anxious. These feelings can be physical (related to damage to your brain), emotional (a reaction to the seriousness of your situation), or both. The first few weeks and months can be a particularly intense time. You might find that friends and family treat you differently, often because they are worried about upsetting you.

At first they might not know what to say or how they can help, but try not to shut them out as most people with brain tumours find the support of family and friends very important.

It is natural to feel shocked about your situation and to feel uncertain about the future. Many people worry about dying. It is normal to worry about this but questions about dying are very difficult to answer. Brain tumours can make you very ill but they can also be controlled successfully for a long time.

It can be hard to express and explain to others how you feel and the worries you have. This can lead to feelings of isolation. It often helps if you can talk to a friend or relative about how you are feeling rather than
keeping your feelings bottled up inside. If you find it difficult talking to your friends or family, you might find it easier to talk to an independent person such as a counsellor or someone on a helpline.

You might also find it helpful to talk to other patients and you could contact one of the organisations in the Useful Contacts section about any patient support groups that meet in your area.

You can talk to one of our neuroscience nurses by calling the Brain and Spine helpline on 0808 808 1000.

Practical support

There are a number of organisations that help people affected by brain tumours and other forms of cancer. The most well known are the Macmillan Cancer Support teams and the Hospice Movement.

These services are available throughout the country and you might have been introduced to them already. They deal mainly with people affected by malignant tumours. If you feel that you might need the type of support they are able to offer, you can discuss this with your GP or the specialist team looking after you.

If you feel depressed or worried while staying in hospital or attending an outpatient appointment, you should feel free to speak to the specialist cancer nurse attached to your medical team. The specialist nurse might be available to offer counselling, support and advice.

If you are having, or think you might have, financial problems because of the impact on your ability to work, you might be eligible for several different payments. It is likely that a social worker is attached to the unit where you are receiving your treatment. Whatever your financial situation, it could be helpful to talk to them as soon as possible. It might also be helpful to talk to your local Citizens Advice Bureau for advice on what financial support is available to you.