Need help now?Brain tumour symptoms and diagnosis
In this section...
Symptoms & signs
Doctors refer to symptoms and signs.- Symptoms are abnormal changes you have felt.
- Signs are what other people have noticed about you e.g. you have become more forgetful, or you need to sleep more.
That’s the easy bit! Because there are so many different types of brain tumour, they can cause a number of symptoms and signs, depending on the nature of the tumour and where it is. And these may be very severe, or may not be apparent at all. So it is a very broad spectrum with which we are dealing. Please remember this if you haven’t been diagnosed with a brain tumour. It is a rare condition and having a headache for more than a week does not mean that you necessarily have a brain tumour.
Brain tumour symptoms
| Symptom | Comment |
| Headaches | Headaches which are more severe in the morning and wake you in the night. They are usually different from headaches you might have had previously. |
| Nausea and vomiting | With a headache this can indicate increased pressure in the head (intracranial pressure). |
| Seizures | A seizure is abnormal electrical impulses in the brain, causing involuntary changes in movement or function, sensation, awareness, or behaviour. A first time seizure in an adult should always be investigated. |
| Weakness, loss of sensation or numbness | This is a sign of pressure on a specific part of the brain and can also be manifested through walking unsteadily or lack of coordination (ataxia) or muscle weakness on one side of the body (hemiparesis). |
| Hearing loss | Could be a sign of an acoustic neuroma. |
| Loss/disturbance of vision, including double vision | In one or both eyes could be a symptom, if there is a tumour pressing on the optic nerve or there is one affecting the visual pathways. |
| Speech difficulties | May also include the loss of ability to write, speak or understand words. A person may have a difficulty forming words (aphasia) or difficulty articulating them (dysarthia). |
| Other brain tumour symptoms | Lack of concentration, confusion, memory loss, disorientation, drowsiness, dramatic change in behaviour. |
Back to top
Diagnosis
How a diagnosis is made
The bones of the skull hide brain tumours. You cannot feel or see them during a routine examination. Scans produce pictures that suggest a particular type of tumour. And fortunately we have lots of weaponry to diagnose brain tumours without invading the body. But the only reliable way to an accurate diagnosis is to examine a sample of a tumour under a microscope, so a biopsy will need to be done. If this type of examination is not possible, an educated assumption is made based on available test results.If there is a suspicion that there might be a brain tumour, then your doctor has a whole host of diagnostic weaponry, which will aid an accurate diagnosis. These tests determine firstly whether you have a brain tumour and then, if you do, what type of tumour.
MRI scan – magnetic resonance imaging. This uses magnetic and radio waves, so no exposure to X-rays or any damaging forms of radiation. An MRI scan takes pictures from any direction. The key here is to find out what the ‘slicing’ is – the measurement between each image taken. If you have a very small tumour and the images are taken every 5mm then it could be missed! Contrast agents (usually gadolinium) can be used to delineate the lesion. These are usually injected into the arm during the scan. This has made Meg feel sick but this could be the thought of the injection. Needles are scary things.
The scan will last about 45 minutes and can be noisy. Some hospitals let you listen to a CD so take one just in case.
Other tips – wear warm clothing; it can be chilly in the room. You will need to take off jewelry and anything else metal. This includes underwired bras and jeans with studs in.
If you have a child undergoing an MRI scan, get them to imagine they are going into a space capsule.
You should receive the results within two weeks. Privately, you can have the scan and reporting done on the same day, but private scans are expensive, usually more than £1000.
CT scan – computerised tomography. Instead of sending out a single x-ray through the body, several beams are sent simultaneously from different angles. The computer then processes the results showing them as a 2D picture. CT scans are less expensive and take less time than an MRI scan, but they don’t always show skull based and low grade tumours, and swelling, as well as an MRI scan. So, if you have one type of scan rather than another, it is usually because one will be more suited to you.
A CT scan usually lasts around 20 minutes and is quieter than an MRI scan. You lie in a table and the scanner moves around your head. If you need a contrast scan, then an iodine-based contrast agent will be injected. This shows the ‘leaky’ blood vessels in a tumour and enables the neuroradiologist to see the mass directly.
Other tips - Warm clothing is recommended; it can be chilly in the room. And if you are allergic to shellfish let the radiographer know, because some contrast agents contain iodine.
Reporting is usually done within two weeks. Again – this may be sooner if you have a private CT scan.
PET scan – position emission tomography. Only a few hospitals in the UK have a PET scanner. This too produces a 3D image but in colour. The patient is given radiation via a medicine called a radiotracer. This goes to the part of the body that needs to be examined. The PET scan then detects radiation inside the body and makes images that show how the radiation is being broken down. This type of scan is not generally used to diagnose a brain tumour, but it can provide additional information about the nature of the tumour. For example, it may help to determine the difference between a benign and malignant tumour because malignant tumours are more metabolically active. And it can show the effects of treatment.
The scan itself takes about 30 minutes. About 40 minutes before the scan the patient is injected with a mildly radioactive substance which has no risk to the body as the level of radiation is very small.
SPECT – single photon emission computed tomography. Similar to PET, a SPECT scan views how blood flows through arteries and veins in the brain. It differs though from a PET scan in that the chemical stays in your blood stream rather than being absorbed by surrounding tissues, thereby limiting the images to areas where blood flows. SPECT scans are cheaper and more readily available than higher resolution PET scans.
As with the PET scan, an injection of a small amount of radioactive tracer is given prior to the scan. Then you'll be asked to rest for about 10-20 minutes until the tracer reaches your brain. Next you'll lie comfortably on a scanner table while a special camera rotates around your head. You have to remain as still as possible so that the machine can get accurate pictures.
Other tip: be sure to drink plenty of fluids to flush out any tracer left in your body.
Angiography - this shows the blood vessels in the brain – the arteries, the veins and sinuses. An angiography will not feel any different to having a CT or MRI scan if it is done as a CT or MRI angiography.
It can also be done with an injection of iodine dye into the femoral artery in the groin, which is then threaded through to the brain. This sounds worse than it is; a numbing agent is used and you may feel brief pain when the catheter is inserted. Sedation is sometimes given for this test.
You will feel a hot, flushed sensation lasting from 5 to 20 seconds as the images are taken. This may be repeated several times in order to view all necessary arteries, so this test can last several hours. You will need to be careful afterwards to prevent bleeding. In some instances, a puncture closure may be used which will allow you to get up and move around sooner.
Any invasive test carries risk. There is a very small risk of the catheter damaging your artery or loosening a piece of plaque lining the artery wall. And then there is the risk of sensitivity to the contrast agent used. The most common side effects from the iodine contrast are a brief metallic taste in your mouth and a feeling of warmth throughout your body.
Back to top
Biopsy
In some cases, if a diagnosis cannot be made clearly from the scans, a biopsy may be performed to determine what type of tumour is present. A biopsy is a procedure to remove a small amount of tumour to be examined by a pathologist under a microscope. A biopsy can be taken as part of an open surgical procedure to remove the tumour or as a separate diagnostic procedure, known as a needle biopsy via a small hole drilled in the skull. A hollow needle is guided into the tumour and a tissue sample is removed. There are four different kinds of way of doing a biopsy, but not all will be available. It depends on the technology that the neurosurgical centre has. As with all invasive surgery, a biopsy carries a small amount of risk, but it is small. About 95% of biopsies are successful in obtaining the sample of tissue. Surgery will usually last between 2 to 4 hours.Back to top
Other tests you may be offered
Hearing tests - audiometry. A hearing test performed by an audiologist, detects whether hearing loss is due to a bone (conduction) problem or nerve damage, which is caused by pressure from something, such as a tumours near the cochlear nerve (e.g., acoustic neuroma). These are completely painless, lasts about 30 minutesVisual field tests – perimetry. This is performed by a neuro-ophthalmologist to detect vision loss and missing areas in your field of view. It takes little time (20/30 minutes) and is completely painless. Results are usually available immediately.
EEG – electroencephalography. Our brains are full of electrical activity and so an EEG records this activity: the absence of, as well as areas of abnormal activity. Evoked responses measure electrical activity which measures responses such as touch, vision or sound. The only discomfort you will feel with this is a bad hair day. The electrodes are attached to your scalp using a sticky gel – this is the longest part of the whole test. The actual test can take anything from 20 minutes up to two hours. After the test your results will need analysing so this may take a few days.
Other tip – don’t put gel or hair products on your hair the day you have this done. This may prevent the electrodes sticking.
Endocrine evaluation measures hormone levels in your blood or urine to detect abnormal levels caused by pituitary tumours (e.g., Cushing’s Disease).
A lumbar puncture (spinal tap) may be performed to examine cerebrospinal fluid for tumor cells, proteins, infection, and blood. This involves placing a needle into the lower back during a procedure which lasts about 20 minutes. There may be some local discomfort and after the procedure you may have a headache, but you should be encouraged to lie flat after the procedure to build up the fluid, which has been removed.
Back to top
Glossary
Some words you might hear during the diagnosis stage of your journeyartifact: images on an MRI scan that may be caused by movement during the scan, metal or a processing problem
coronal image: an MRI image which splits the brain into front and back sections
decreased signal: objects that appear darker on an MRI scan
enhanced MRI; an MRI after contrast, such as gadolinium, is given
flair sequence: a way of doing MRI that is sensitive to water in the brain. It tells if there is swelling around the tumour
gamma rays: electromagnetic radiation emitted during radioactive decay and having an extremely short wavelength
increased signal: objects that appear whiter on an MRI scan
photon: a particle that travels at the speed of light
positron emission tomography (PET): a nuclear medicine test in which tissue function is imaged. Damaged tissues have reduced metabolic activity, therefore gamma radiation from these areas is reduced or absent
positron: an electrically charged particle that has the opposite charge as an electron. It reacts with an electron to produce gamma rays.
radiolabel: the technique of attaching, or "tagging", a radioactive molecule to another molecule (such as a protein) so that it can be identified in the body.
sagittal image: a sideways MRI image that splits the brain into left and right sections
tomography: the technique of using rotating X-rays to capture an image at a particular depth in the body, bringing those structures into sharp focus while blurring structures at other depths.
tracer: a substance, usually radioactively labelled, which is injected into your body and can be followed to gain information about metabolic processes.
Back to top
Just been told?
Right now you will be in a state of shock – your world has been completely upended. But there will come a point at which you will feel that you are in control of a situation over which you feel that you have no control - at the moment. It does get better. Believe me.What to do when you hear the diagnosis
When the consultant radiologist told us that Meg had a brain tumour, I discovered what being speechless means. I opened my mouth but no words would come out. Unusual for me! The possibility that you or the person for whom you are caring might have a brain tumour will have been on your mind, otherwise you wouldn’t have reached this point, but you never know how you will react until you actually hear the news.
You will be reeling but your ability to cope does get better – you develop systems to cope with such traumatic change. And it is so hard being person that loves the afflicted so much that it hurts; you just want to give the person hope and try to hold it together for all around. And if it is you that has been diagnosed with a brain tumour then immediately your thoughts are about those around you and how they will cope. You want to reassure yet you yourself are feeling very frightened.
What you want to know is that you have explored every avenue and have done everything that you can be doing to help. I can offer the following suggestions, but please remember we are not doctors - just people who have been through a similar experience with our daughter. Much depends on where you are based and the mindset of the people who are working with, and I hope, not against, you. And of course, you may well be doing much of this already, so I apologise if it sounds patronising.
Our suggestions
- You must look after yourself. You will now be the lynchpin and will need to be orchestrating everything. There will be so many people involved in the patient's care (read our guide to Who can help), and even if (s)he was their only patient, I doubt they would be able to talk to and update each other on a regular basis. Establish a folder where you keep copious notes of everything, including a contact list of the people involved in the patient's care. Take this folder to all consultations; the notes won't always be in the right place at the right time. I was called the scary mum by one of Meg's consultants because I knew more than he did about her case and had it all with me. It’s OK to be scary at a time like this. Ask consultants to write to you afterwards about what was discussed. Not all do this automatically. Make sure that the GP is included in the CC to these letters. And also, if the patient is willing and it is appropriate e.g. they may only just be over 18, get them to sign a standard letter which you can show to people, which allows people to disclose information to you and discuss the patient's case with you. A copy of this letter should be kept on people's files. Meg didn't want to be bothered with any of this and yet people wouldn't talk to me because she was an adult. She was only just 19!
- Obtain at least two sets of extra scans from the hospital, preferably on CD. Some hospitals do charge a small amount for these, but most don't. Keep one for yourself and take these along to consultations, for the same reason outlined above. Use the other to send for second, third opinions. Don't be put off by a reluctance to let you have them. Insist.
- Technology changes so it doesn't really matter where the MRIs (brain scans) are done. What is critical is to make sure that the same consultant radiologist reads the scans every time, so that they know the state of play intimately. Insist on this too. Don't be bullied by people.
- Visit the GP ASAP and ask for a second, even third opinions. If you want more information about where you might go and who might be appropriate to see, ask us at brainstrust, ask your consultant or your GP. Get your GP on your side – they can unlock so much for you.
- If you would like a free 2nd opinion then please contact helen@brainstrust.org.uk. We can't give you a second opinion, but we know a man (or lady) who can - at one of the neurosurgical centres in the UK, such as the National Hospital for Neurology and Neurosurgery in London.
- Ask if there is a community neurological rehabilitation nurse in your area (through your GP). Meg’s is brilliant, as much for me as for Meg. She came to the house and just talked about our needs and then unlocked things for us, but I didn't know she existed until I went to our GP in desperation. We also (after a year) applied for the disability living allowance for Meg – this is another ball game you may need to face in time. Again – ask us for help.
- Finally, you will be frustrated but don't expect answers from your consultants - they don't really know anymore than you do. Once you accept this you will be able handle the whole situation much more effectively. It took us a year to get to this point. Seek second, third, even fourth opinions and then try to stand back and draw out the key notes. Your position is not easy – you will be feeling like you are damned if you do and you're damned if you don't but at least you will be able to say that any decisions you have made have been informed decisions.
Knowledge is power: key questions to ask your doctors
It is essential to know about the type of tumour (read more about tumour types) and also whereabouts it is in the brain (read about brain anatomy), as this will provide information about the type of symptoms that could be experienced. If possible seek the answers to these key questions as soon as you can:- What is the tumour type?
- What is the grade?
- Where is it?
- How will its position this impact on me?
And of course, the more you know, the more in control you will feel as you will be able to make informed decisions about which direction you should take whilst navigating your way around.
Back to top
Your suggestions
The more we can sail this ship together the better. If you have any further ideas/advice you can share with us then visit our FAQ section and add your comments.Back to top
