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Follow up for brain tumours

Men and women discussing brain tumours

This page tells you about the follow up appointments after treatment for a brain tumour. There is information about

 

A quick guide to what's on this page

Follow up for brain tumours

After your treatment has finished, you will need to have regular check ups. At the check ups your doctor will examine you and ask about any symptoms you are having. You may also have CT scans or MRI scans from time to time. You won’t usually have regular scans. A growing brain tumour is likely to produce new symptoms. So if you don’t have any symptoms, it is unlikely that a scan would find a change in your condition.

Worrying about symptoms

It is normal to worry about your health when your treatment is over. If you are worried between appointments, get in touch with your doctor or specialist nurse.

If your brain tumour does come back, you are likely to have symptoms similar to the ones you had before. But having symptoms does not necessarily mean the tumour is back or is growing. Other possible causes include delayed or long term side effects of radiotherapy, or temporary swelling after chemotherapy. Fluid imbalance, high blood pressure or infection can also cause neurological symptoms such as headaches.

Depression is quite common in people who have had a brain tumour. Counselling or anti depressants or a combination of these can help with depression. If you (or your family) think you are depressed, see your doctor or specialist nurse. Many people find it helpful to have counselling after cancer treatment. To find out about counselling, look in the coping with cancer section.

 

CR PDF Icon You can view and print the quick guides for all the pages in the Treating brain tumours section.

 

 

What happens at follow up appointments

After your treatment has finished, you will need to have regular check ups. These will include

  • Telling your doctor about any symptoms or side effects and any changes in medicine since your last appointment
  • A physical examination by your doctor
  • CT scans or MRI scans from time to time

After surgery, you will go back to see your treatment team (doctors and specialist nurses) regularly until you have fully recovered. If you've had a non cancerous (benign) or low grade brain tumour, your surgeon will continue to see you for up to 5 years after your surgery. After you have recovered from your operation, your appointments will become less frequent, and you may only see the surgeon once a year if all is well.

If you've had a high grade brain tumour, you will see the brain tumour specialist (neuro oncologist) when you have recovered from your operation.

Your treatment team will discuss with you whether you need to have routine scans. Most people do not have routine scans during follow up because a growing brain tumour is likely to produce new symptoms. If you have no symptoms, a scan is unlikely to find any change in your condition.

Sometimes it can be difficult to tell on a scan whether brain changes are due to your past treatment with surgery or radiotherapy or whether there is new tumour growth. If your doctor feels it is necessary, you may have

These scans are better at telling the difference between late radiotherapy side effects and regrowth or recurrence of your brain tumour.

 

Worrying about symptoms

It is normal to worry about your health when your treatment is over. You may have been in close contact with the hospital doctors and nurses for a long time during your treatment. Suddenly, it may seem as if you are out on your own. And it will take a while to get used to this. If you are worried between appointments, get in touch with your doctor or specialist nurse. They can arrange an extra appointment, which hopefully will put your mind at rest.

If your brain tumour does come back, you are likely to have similar symptoms to those you had before. But having symptoms does not necessarily mean the tumour is back or is starting to grow again. Other causes of symptoms may include the following.

Early delayed syndrome

Early delayed syndrome causes symptoms in up to 4 out of 10 people treated with radiotherapy to the brain. It means side effects from your radiotherapy that have come on after your treatment. It gets better on its own, or with steroids. There is information about this in the long term side effects of radiotherapy section.

Infection, raised blood pressure or fluid imbalance

Infection, raised blood pressure and fluid imbalance can all cause an increase in the pressure inside the head. So they can all cause neurological symptoms, such as headaches. Normally, you might not think anything of this. But having had treatment for a brain tumour, it is only natural to worry that little bit more.

Tiredness or depression

Tiredness or depression can make you feel sluggish. You are likely to be less alert than you would like and your reactions may be slow. It can be difficult to work out if you are tired and feeling sad due to the treatment or if you have depression. Depression is quite common in people who have had a brain tumour. One key sign is that you no longer enjoy anything that you used to.

There is help and treatment for depression. If you (or your family) think you are depressed, see your doctor. A series of counselling sessions or a short course of an anti depressant may make life feel much better for you. Many people find it helpful to have counselling after cancer treatment. To find out about counselling, look in the coping with cancer section.

Other causes of symptoms can include

  • Blockage of the fluid circulation around the brain (hydrocephalus)
  • Fits (seizures) – it can take weeks to recover fully from fits
  • Temporary brain swelling after chemotherapy
  • Long term side effects of radiotherapy
 

More information about follow up

If you would like more information about follow up you are welcome to contact the Cancer Research UK nurses. You can call them on freephone 0808 800 4040. The lines are open from 9am to 5pm, Monday to Friday. 

You can also contact one of the brain tumour organisations or look at our brain tumour reading list

If you want to find people to share experiences with online, you could use Cancer Chat, our online forum.

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Updated: 30 December 2013