Brain tumour symptoms and diagnosis

This page helps you understand the difference between brain tumour symptoms and signs, and how a diagnosis of a brain tumour is made. It also provides guidance if you are told you have a brain tumour.

Read the diagnosis section of our patient guide for further guidance.

On this page you will find:

• Brain tumour symptoms
• How a brain tumour diagnosis is made
• Biopsy of a brain tumour
• Other tests you might be offered
• Glossary
• Just been told?
• Key questions to ask your doctor
• Your suggestions

Brain tumour diagnosis

When you hear the words “you may have a brain tumour” it can be a terrifying, isolating time, causing uncertainty.

This ‘What to expect if you are diagnosed with a suspected brain tumour’ leaflet will help you to cope with the fear and uncertainty. It explains what you can expect to happen next, so you can feel more informed and more in control after your scans. We’ve also included some top tips from those that have been through the same experience.

How a brain tumour 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 (link to the biopsy section further down the page) will sometimes 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. Contrast agents (usually gadolinium) can be used to delineate the lesion. These are usually injected into the arm during the scan. This has made some of our patients feel sick but this could be the thought of the injection. Needles are scary things.

Just a word about pacemakers; you may not be able to have an MRI scan if you have a pacemaker fitted or other metal objects in your body but alternatives are offered. Some new pacemakers are MRI compatible though – you will need to check with your cardiologist.

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 can be expensive. You can get one done privately with a report for a little over £200 – it depends where you go.

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 have lower resolution so could potentially not show some skull base and low grade tumours, 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 on 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 (that means that within the tumour cells that are alive and growing, chemical reactions are happening within them). And it can show the effects of treatment. For more information about the difference between benign and malignant tumours visit anatomy and tumour types.

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. Angiography will not feel any different to having a CT or MRI scan if it is done as a CT or MRI angiogram.

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.

Brain tumour 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 different ways of doing a biopsy, but not all will be available. It depends on the technology and experience that the neurosurgical centre has. As with all invasive surgery, a biopsy carries a small amount of risk, but it is small. Over 95% of biopsies are successful in obtaining the sample of tissue sufficient to give an accurate diagnosis. Surgery will usually last between ½ and 2 hours.

Having a biopsy will provide a more accurate diagnosis. With advances too in the biology of cancer, the results of your biopsy can also help map out the best treatment pathway for you. Your tumour tissue will be examined by a neuropathologist. They determine what type of tumour it is you have (and it can be one of about 140) and will play a key role in the Multi Disciplinary Team (MDT) meeting about what the options are for your treatment.

Once a biopsy is done, your brain tumour will be the focus of an intensive investigation using all sorts of complex tests. Increasingly, this may include an exploration of its genetic profile so that as accurate a diagnosis as possible can be formed and the right therapies can be matched to your need; guiding your treatment so that it is optimised for you. For more information on these tests read our page on therapies and treatments for a brain tumour.

Glossary

Some words you might hear during the diagnosis stage of your journey

artifact: 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

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.

Click here to view our full glossary of terms you might encounter on your brain tumour journey.

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, we discovered what being speechless means. I opened my mouth but no words would come out. 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 the 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. We 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 with whom you are working. And of course, you may well be doing much of this already, so apologies if it sounds patronising.

Our suggestions

1. 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, and even if (s)he was their only patient, it is not manageable for them to be able to talk to and update each other on a regular basis. Use the brainstrust Patient Folder to 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 because I had all of Meg’s information 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 copied into these letters. And also, if the patient is willing and it is appropriate e.g. they may only just be over 18, ask them to sign a standard letter. This 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!
2. Obtain at least two sets of extra scans from the hospital. They will come on CD. Some hospitals do charge a small amount for these (around £30), 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, quietly and firmly.
3. Technology changes so it doesn’t really matter where the MRIs (brain scans) are done. What is critical is to make sure that there is a dedicated neuroradiologist who reads your scans so that they know the state of play intimately. It won’t always be possible but if it is, insist on this too.
4. Ask if there is a community neurological rehabilitation nurse or a neuro-oncology clinical nurse specialist in your area (through your GP or clinician at the hospital). This person is brilliant, as much for the carer as for the patient. They will explore your needs and unlock things for you. We also 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. Macmillan is also excellent on finance matters and you’ll also find our Brain Tumour Hub useful.

A word about seeking further opinions

We are mindful that everyone reacts to a serious diagnosis in different ways. It is your right to seek further opinions, and this will empower some people. Some people would prefer not to exercise this right. Some people prefer to know as little as possible about their diagnosis; some people like to relinquish control of their situation to others. All of these are perfectly normal and acceptable ways of coping. And seeking second, even third opinions can cause confusion and stress. But they can inform, and help with decision-making. They can also be reassuring. We can only talk from our experience. We believe that you need to be informed to make decisions. And that might mean gathering information and then deciding not to make a decision. That’s a decision too!

The key to this is knowing what your options are. And if you need to make doubly sure that the options you have on the table are the right ones for you then think about a second opinion. You also need to know that you may hear that there are no other options and this can be distressing. What is key is that you are in charge and that the path that you choose is the right one for you. Do not worry about upsetting your clinicians – a good clinician will understand the need to seek other opinions in a diagnosis as serious as this.

Read our Know How on second opinions

How to get a second opinion about your brain tumour diagnosis

If you want to seek further opinions, you will need a copy set of scans. Ask your hospital for these. There are two ways of seeking a second opinion:

Visit your GP 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.

We can also help. Contact hello@brainstrust.org.uk. We can’t give you a second opinion, but we know a man (or lady) who can – at one of the leading neurosurgical centres in the UK. You don’t always need to go through your GP for this.

Finally, you will be frustrated but don’t expect answers from your healthcare team, unless you ask the question. That’s why it is so important to be informed. Once you accept this you will be able to 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

Yesterday was the first time, for about a year, that we have been able to talk through my husband’s illness with someone in the medical profession who has been able to answer our questions with a full understanding of his illness.

Thank you so much for recommending that we go and see him.

Julie, carer, Sussex

Knowledge is power: key questions to ask your doctors

I feel I have a far better idea of what to ask my consultant when I next see him and what the long term implications will be. This has given me more sense of not only an understanding of my situation, but I feel like I have regained some control of the situation and my life again.

Nadia, London, 2011

It is essential to know about the type of tumour  and also whereabouts it is in the brain, as this will provide information about the type of brain tumour symptoms that could be experienced. If possible seek the answers to these key questions as soon as you can:

• What is the brain tumour type?
• What grade is the brain tumour?
• Where is the brain tumour?
• How will its position 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.

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 please get in touch.

Date published: 17-05-2009
Last edited: 31-08-2017
Due for review: 31-08-2020

This information is currently being reviewed as of Feb-2022