Follow up for brain tumours

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

• Being examined by your doctor and asked about any symptoms you are having
• 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) brain tumour, your surgeon will continue to see you for 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 cancerous brain tumour, you will see the cancer specialist (oncologist) when you have recovered from your operation.

You will not have scans at every visit to your specialist. CT scans expose you to a small amount of radiation and so it is not good to have too many of them. But the main reason for not having routine scans during follow up is that 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. So your specialist is unlikely to arrange one if they are certain there is nothing wrong.

If you have had radiosurgery, you may have regular MRI scans so that your doctor can keep an eye on how the treatment is working.

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

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

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

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. You can have an extra appointment arranged, 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 include

• Early delayed syndrome
• Infection or a high temperature
• A fluid imbalance
• Raised blood pressure
• Tiredness or depression
• Blockage of the fluid circulation around the brain (hydrocephalus)
• Fits - it can take weeks to recover fully from fits
• Temporary brain swelling after chemotherapy
• Long term side effects of radiotherapy

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 and depression can make you feel sluggish. You are likely to be less alert than you would like and your reactions may be slow. Depression is very common in people who have had a brain tumour. 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 antidepressant such as Prozac or Seroxat may make life feel much better for you.

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 more about this in the long term side effects of radiotherapy section.

About 1 in 10 people who are going to respond to chemotherapy for a brain tumour get worse before they get better. The chemotherapy kills off brain tumour cells. The nervous system takes a while to get rid of this type of waste matter. While the dead cells are still there, your tumour will not shrink very much. So, to start with, it may seem to you that your condition is not improving. But give it time and you are likely to see the benefit.

It is quite common nowadays for people to have counselling after cancer treatment. To find out more about counselling, look in the coping with cancer section.