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Follow up appointments

Read about follow up appointments and tests after treatment for brain tumours.

Why you have follow up appointments

You usually have follow up appointments every few months to check how you are and see whether you have any problems or worries. The appointments also give you the chance to raise any concerns you have about your progress.

What happens

Your doctor or nurse examines you at each appointment. They ask how you are feeling, whether you have had any symptoms or side effects, and if you are worried about anything.

You might also have tests at some visits.

These tests might include scans or blood tests.

After surgery, you will go back to see your treatment team (doctors and specialist nurses) regularly until you have fully recovered.

Non cancerous (benign) or low grade

Your surgeon or a neurologist will continue to see you regularly if you have had a non cancerous (benign) or low grade brain tumour. If all is well, your appointments will become less frequent. You may then only see the surgeon once a year.

High grade, or a low grade tumour that needs further treatment

You might need further treatment after surgery if you have a high grade brain (malignant) tumour. Some people with a low grade tumour might also need further treatment. You see a brain tumour specialist (neuro oncologist) to discuss this. 

Once you have finished treatment, you have regular appointments with your team. These gradually become less frequent if you don't have any problems. 

Scans

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. A scan is unlikely to find any change in your condition if you have no symptoms.

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.

You might have:

  • A MRI scan
  • A PET-CT scan
  • A SPECT scan

Where you have your follow up appointments

You might go for check ups at the surgical outpatients after surgery. You go to the cancer clinic if you have had chemotherapy or radiotherapy. The surgeon and the oncologist might share your follow up. This means you see the surgeon sometimes and the oncologist at other times.

If you are worried

It is normal to worry about your health when your treatment is over. You might have had close contact with your treatment team for a long time. Less frequent appointments can make you feel like you are on your own.

Some people worry more as the next appointment approaches. It can bring back any anxiety you had about your brain tumour.

Contact your doctor or specialist nurse if you have any concerns. You should also contact them if you notice any new symptoms between appointments. You don’t have to wait until your next visit. They can arrange an extra appointment if necessary, which can hopefully put your mind at rest.

It can help to tell someone close to you how you’re feeling. Sharing your worries can mean they don’t seem so overwhelming. Many people find it helpful to have counselling after cancer treatment.

Symptoms

If your brain tumour does come back you are likely to have similar symptoms to when you were diagnosed. But having symptoms does not necessarily mean the tumour is back or is starting to grow again.

Other causes of symptoms might include the following.

Early delayed syndrome

Early delayed syndrome causes symptoms in up to 4 out of 10 people (40%) treated with radiotherapy to the brain. This collection of symptoms include:

  • poor appetite
  • sleepiness
  • lack of energy
  • worsening of your old symptoms

The side effects can start from a few weeks to a few months after finishing your treatment. They usually get better in about 6 weeks. You might not need any treatment. Or you might have steroids to relieve these symptoms.

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 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. See your doctor if you (or your family) think you are depressed. A series of counselling sessions or a short course of an anti depressant might make you feel better. Many people find it helpful to have counselling after cancer treatment.

Other causes of symptoms

Other possible causes of symptoms include:

  • a blockage of the fluid circulation around the brain (hydrocephalus)
  • fits (seizures) 
  • temporary brain swelling
  • long term side effects of radiotherapy

 

Talk to your specialist nurse or doctor if you are worried about any symptoms. They can decide whether these need investigating.

Information and help

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