Should I see a brain tumour specialist?

It can be very difficult for GPs to decide who may have a suspected cancer and who may have something much more minor that will go away on its own. With many symptoms, it is perfectly right that your GP should ask you to wait to see if they get better or respond to treatment. If GPs referred everyone who came to see them to a specialist immediately, the health system would get jammed and people needing urgent appointments wouldn't be able to get them. But there are particular symptoms that mean your GP should refer you to a specialist straight away.

Many people worry that a constant headache might mean they have a brain tumour. It is important to know that headaches are very common in the general population. A headache on its own is very, very rarely due to a brain tumour. In fact, national guidelines point out that less than 1 in every 100 people suffering from headaches has a brain tumour. So it would not be right for doctors to refer everyone with a headache urgently to a specialist.

The National Institute for Health and Clinical Excellence (NICE) have produced guidelines for GPs to help them decide which patients need to be seen urgently by a specialist. These Government guidelines on referrals for brain tumours were updated in June 2005.

According to the NICE guidelines you should ideally get an appointment within 2 weeks for an urgent referral. The symptoms that NICE say need urgent referral are

• Headaches that occur in the early morning or have started recently and are accompanied by other symptoms, such as vomiting, drowsiness, blackouts, or changes in personality or memory
• New nervous system symptoms that are getting worse, such as fits, mental changes, deafness on one side, double vision, weakness of an arm or leg, or loss of feeling in part of the body
• A recent seizure (fit) or fits - this could be a fit affecting the whole body, or affecting just one part of the body, such as jerking or twitching in a hand, arm or leg
• Changes in your behaviour, mental abilities or personality that are worsening quite quickly

The guidelines say that your GP should examine you if you have any nervous system symptoms, headaches or fits. This will include looking at the back of your eyes for signs of swelling. This swelling is called papilloedema. It is a sign of raised pressure inside your skull.

If you have personality changes or changes in your mental abilities, your GP is likely to want to talk to someone who knows you well and can confirm this. This is most likely to be a close relative or partner.

The guidelines suggest that your GP should consider referring you urgently to a specialist if you have started to have headaches recently (but have had them for at least a month) and they are not migraines. But this is only if you have other symptoms that suggest you may have increased pressure in your head (raised intracranial pressure). This may include being sick, being woken by a headache or a headache that gets worse or better depending on your position. If you have persistent headaches that do not come on with other symptoms, your GP may think about discussing your case with a specialist or making a non urgent referral for you.

NICE have included this because headaches can often be part of a chronic condition, such as depression, or caused by stress. They are advising the GP to use their judgement. If you have been having the same symptoms on and off for years, have had them investigated and have been found not to have cancer, your GP should not be expected to refer you as an urgent case each time your symptoms come back.

If, after examining you, your GP thinks it necessary, they may arrange tests and refer you to a brain specialist (neurologist) to discuss your symptoms with them. If your test results suggest a brain tumour, a neuroscience multidisciplinary team will discuss your case. If you are drowsy, your GP should arrange for you to see a hospital specialist immediately.

If you are concerned that your GP is not taking your symptoms as seriously as you think they should, you could print this page and take it along to an appointment. Ask your GP to talk it through with you and then you may be able to decide together whether you need to see a specialist and if so, how soon.