Brain tumours: Teenagers and young adults

This section is for teenagers and young adults. It’s about the brain and different types of brain tumour.

Any illness to do with your brain can be scary. Understanding a bit more about how the brain works might help.

The brain

The brain and the spinal cord make up the central nervous system (CNS). The brain is the ‘control centre’ which coordinates most body functions. It is inside the skull, which protects it. The spinal cord is made up of nerves that run down the spine. It passes messages between the brain and the rest of the body.

The brain and the spinal cord are covered by 3 thin layers of tissue called the meninges. Between 2 of these layers is a fluid called cerebrospinal fluid (CSF). The meninges and CSF help to protect the brain and spinal cord.

The main parts of the brain are the:

• cerebrum
• cerebellum
• brain stem
• pituitary gland

Cerebrum

This is at the top of the head and is the largest part of the brain. It’s made up of 2 halves called hemispheres. It controls thinking, learning, memory, problem solving, emotions, and touch. It also makes us aware of our body position.

Cerebellum

This is at the back of the head, near the middle. It controls movement, balance and coordination.

Brain stem

This connects the brain to the spinal cord. It’s in the lower part of the brain, just above the back of the neck. It controls breathing, body temperature, heart rate, blood pressure, eye movements and swallowing.

Pituitary gland

This is in the middle of the brain. It makes hormones that control things such as growth, metabolism, periods, and sperm production.

Types of brain tumour

There are different types of brain tumour. They are usually named after the type of cells they develop from. Brain tumours can be either benign (non-cancerous) or malignant (cancerous). This information is about both types.

Benign brain tumours often press on the brain but don’t usually spread into surrounding tissue. They are also less likely to spread around the brain and spinal cord. If they can be removed with an operation they may not cause any more problems. Sometimes it’s difficult to remove a benign tumour because of where it is in the brain. In this case, you might need treatment with chemotherapy or radiotherapy.

Some benign tumours can cause long-lasting changes. This can be because they increase the pressure inside the brain, or because they press on important areas of the brain.

Malignant brain tumours can spread from where they started into surrounding brain tissue, causing pressure and problems in those parts of the brain. They can also spread through the cerebrospinal fluid (CSF) into other parts of the brain or the spinal cord.

This information is about tumours that start in the brain, which are called primary brain tumours. Sometimes cancers that start in other parts of the body can spread to the brain. These are known as secondary brain tumours.

The types of brain tumour most likely to affect teenagers and young adults are:

• pituitary tumours
• gliomas
• medulloblastomas
• germ cell tumours

Gliomas

These start in cells called glial cells. There are different types of glioma, but the ones that affect younger people are usually astrocytomas, oligodendrogliomas and ependymomas. These types of tumour can develop in the brain or in the spinal cord.

Astrocytomas and oligodendrogliomas

These are the most common type of glioma.

Astrocytomas develop from a star-shaped cell called an astrocyte. Oligodendrogliomas look like a fried egg. Sometimes tumours are a mix of both cells. These are called oligoastrocytomas. Doctors group them by how quickly they grow (known as the grade of the tumour). They can tell the grade from how the cells look under a microscope.

Ependymomas

These are a rarer type of glioma. They develop from the spinal cord, and from cells that line the fluid-filled spaces (ventricles) in the brain. These tumours can spread to other parts of the brain and spine through the CSF.

Pituitary tumours

These are usually benign tumours that grow in the pituitary gland. They are mostly grouped into pituitary adenomas and craniopharyngiomas.

Some cause too many or too few hormones to be produced in the body. They very rarely spread.

Medulloblastomas

These usually start in the cerebellum, at the back of the brain. Sometimes they can spread through the CSF, or very rarely to other parts of the body. They start from cells that haven’t properly developed yet, and are sometimes called primitive neuroectodermal tumours (PNET).

Germ cell tumours of the brain

This type of tumour is rare. They develop from very early cells called germ cells, which have the potential to grow into any type of tissue.

Although germ cell tumours often develop in the ovaries in girls or the testicles in boys, they can also start in other parts of the body, including the brain. They may be non-cancerous or cancerous. They are called by different names depending on what the cells look like under a microscope.

We also have more information about:

• symptoms of brain tumours
• having tests for brain tumours
• treatment for brain tumours

If you’re looking for information about brain tumours in people of all ages, read our general brain tumours section. We also have information about brain tumours in children.

This section on brain tumours is for teenagers and young adults.

Signs and symptoms

The symptoms of a brain tumour depend on the size of the tumour and where it is.

The tumour can:

• cause fits
• affect the messages sent by that part of the brain to other parts of the body
• cause ‘raised intracranial pressure’ – there’s only a certain amount of space in the skull for the brain and as a tumour grows, there can be a rise in pressure in or around the brain

Common symptoms of ‘raised intracranial pressure’ are:

• headaches, which are often worse in the morning
• vomiting (usually in the morning) or feeling sick
• fits (seizures)
• feeling very irritated or losing interest in day-to-day things like friends, school or going out
• problems with your eyes, such as blurring or seeing double
• feeling more sleepy or drowsy than usual
• changes in your balance and walking, or weakness down one side of the body
• problems with speech
• personality changes

There’s often a simple explanation for many of these symptoms. But if you have any of these or if you’re worried, it’s important to speak to your GP straight away.

Causes

The cause of most brain tumours is unknown. Research is looking into this all the time.

Young people with rare genetic conditions that run in families, such as neurofibromatosis type 1 and neurofibromatosis type 2, have an increased chance of developing a brain tumour.

Mobile phones, power lines and certain viruses have all been suggested as possible causes of brain tumours. There’s been a lot of research into these possible causes, especially mobile phones. But there has been no strong evidence for any of them.

Remember – nothing you’ve done has caused the tumour.

If you’re worried about brain tumours

If you think you might have any of the symptoms of a brain tumour, you should go straight to your GP. They'll be able to talk to you about your symptoms. They can arrange tests to find out more, or refer you to a specialist doctor.

We also have more info about:

• having tests for brain tumours
• treatment for brain tumours
• the brain 

If you’re looking for information about brain tumours in people of all ages, read our general brain tumours section. We also have information about brain tumours in children.

This section on brain tumours is for teenagers and young adults.

Seeing your GP

Your GP will examine you and, depending on your symptoms, they may arrange some tests. Or they might send you to hospital straight away to see a doctor who specialises in problems to do with the brain. These doctors are called neurologists or neurosurgeons.

Sometimes a brain tumour is diagnosed after someone has been taken into hospital to check out symptoms that have happened suddenly, like having a fit.

At the hospital

You’ll usually be seen at a hospital with a centre or unit specialising in treating brain tumours.

Your specialist will ask you questions about your symptoms and how you’ve been feeling. They’ll examine the back of your eyes using an instrument with a light on the end of it to check for swelling. Swelling can be a sign of raised pressure in your head.

They’ll usually check:

• your balance
• your coordination
• your muscle strength
• your reflexes
• whether you can feel pinpricks on areas of your skin

You might also have your eyesight and hearing tested.

Tests

You’ll need to have some more tests before a diagnosis is made. Your doctor will select the most suitable tests for your situation. These tests are important because they help your specialist plan the best treatment for you. Your doctor and specialist nurse will explain things to you, but don’t be afraid to ask questions.

Macmillan Cancer Support has information on the possible tests, which include:

• a CT scan or MRI scan – these show a detailed picture of the inside of your head
• blood tests – these are done to check your general health and sometimes to measure the level of certain chemicals or hormones in your blood
• lumbar punctures – in this test a small needle is used to collect some fluid from the base of your spine; it's sometimes done to look for cancer cells in the fluid surrounding the brain and spinal cord
• X-rays – might be taken to check your skull and chest

Having a biopsy

Doctors often need to remove a small part of the tumour (biopsy) to find out exactly what type of tumour it is. The piece of tumour that’s removed is looked at under a microscope by a doctor called a pathologist. The operation will be done under general anaesthetic. This is where you are put into a deep sleep. You’ll probably be in hospital for a few days.

An MRI or CT scan is used to find the exact position of the tumour. The surgeon makes a small hole in the skull and passes a fine needle through it to remove a piece of the tumour.

Guided biopsy

This is often used to make sure the doctor takes the biopsy from the most appropriate part of the tumour. You will have a head frame fitted that will help guide the surgeon to exactly the right place before they take the biopsy. This is called a stereotactic biopsy.

Tests and waiting for results

Having tests and waiting for results can be scary. Remember – you don’t have to keep your worries to yourself. Talking about how you feel and getting support from family, friends or your specialist nurse and doctor can make it a bit easier. You could also talk to one of Macmillan's cancer support specialists on their free helpline.

This information is about having tests for brain tumours. We also have more information about:

• symptoms of brain tumours
• treatment for brain tumours 
• the brain

If you're looking for information about brain tumours in people of all ages, read our general brain tumours section.

This section on brain tumours is for teenagers and young adults.

A team of specialists will plan your treatment. They will talk to you about the best treatment for you.

It's normal to have a combination of treatments, so you may be seen by different doctors, such as:

• a neurosurgeon, who specialises in brain operations
• a neurologist, who treats brain conditions
• a cancer specialist (oncologist), who treats brain tumours with radiotherapy and chemotherapy

You’ll usually see a specialist nurse who looks after people with conditions affecting the brain, or a specialist nurse for teenagers or young adults with cancer. If you have radiotherapy (X-ray treatment) you will be given this treatment by a radiographer.

There are different types of brain tumours, so treatment won’t be the same for everyone. Your doctors look at the type of brain tumour you have, its size and where it is in the brain before deciding on the best treatment for you.

The main treatments for brain tumours are: 

• surgery – an operation to remove all, or as much as possible, of the tumour 
• radiotherapy – uses high-energy x-rays to treat cancer cells
• chemotherapy – uses anti-cancer drugs to destroy cancer cells 

Your specialist doctor and nurse will explain your treatment and answer any questions you have. It’s important you understand what’s involved. You’ll probably need some time to talk it through with your family.

Medicines you may need to take

You might need to take these medicines for a while to reduce or control the symptoms of the brain tumour:

• steroids, which can reduce swelling or inflammation in the brain and help with symptoms
• anticonvulsant medicines that help prevent fits (seizures)

Surgery for brain tumours

Your surgeon will usually try to remove all, or as much as possible, of the tumour. Before the operation, they will talk to you about what’s involved and the benefits and risks of the operation. It’s important you understand all this, so ask all the questions you want to.

You’ll usually be in hospital for a week, sometimes longer. Your doctor or nurse will tell you what to expect before and after the operation as it can be different for everyone.

Before the operation you’ll probably need to have some of your hair shaved off. This is done in the anaesthetic room. You may prefer to have all your hair shaved off. You can cover up with a wig or hat while it grows back.

For some types of brain tumours, particularly low-grade gliomas, your surgeon might suggest doing an operation while you are awake. This is called an 'awake craniotomy'. If you need this, you will be given plenty of medication to make sure it doesn't hurt.

Sometimes surgery is not needed, or it’s not possible to remove the tumour. Your specialist may think that another treatment would be better for you. They will discuss this with you and you can ask any questions to help you understand your options.

What happens after the operation?

After the operation you are monitored very closely for the first 12 to 24 hours. At first you might be attached to a machine called a ventilator that helps you breathe. Your nurse or doctor will tell you if this is likely to happen.

Your head might be bandaged and you’ll have a tube draining any extra blood that’s collected around the wound into a plastic bottle. You may also have another tube draining extra cerebrospinal fluid (fluid that surrounds the brain). This is to make sure you don’t get too much pressure building up inside your brain. Your doctor will remove these tubes as soon as it’s safe, usually after a couple of days.

You’ll have a drip to give you fluids until you’re eating and drinking again. There may be some swelling and bruising around your face and eyes. This will settle down after a few days.

When you wake up you might have a headache. You’ll be given painkillers regularly until this eases off. Tell your nurse or doctor if you’re in pain so that they can give you something stronger.

Radiotherapy for brain tumours

Radiotherapy uses high-energy X-rays to treat cancer cells. It can be used:

• after the operation to treat any cells that may have been left behind
• instead of an operation when a brain tumour doesn’t need to be or can’t be removed
• if a brain tumour comes back after surgery

For some brain tumours, it’s normal to treat your spinal cord (the nerves that go from your brain to your body) as well as your brain. Your doctor will tell you if this is the case.

Types of radiotherapy

There are 3 types of radiotherapy that are used to treat brain tumours:

• photon radiotherapy (given at your local hospital)
• proton radiotherapy (until 2018/2019 this is given in Switzerland or America)
• stereotactic radiosurgery/radiotherapy (given at specialist hospitals in the UK)

Your doctor will discuss with you which treatment would be best.

You’ll have your treatment in the radiotherapy department of the hospital. It’s usually given Monday to Friday, with a rest at the weekend. The number of treatments you have will depend on your situation, but it can last from 1 day to 7 weeks.

You will have to wear a mask or shell to keep your head as still as possible during radiotherapy treatment. This makes sure treatment is delivered to the exact area each time. Your mask is made before your treatment is planned. You’ll be able to see and breathe properly, but it might feel a bit tight. You only have to wear it for a few minutes at a time. Most people find they get used to it pretty quickly. Let your nurse or radiographer know if you’re worried about this.

The treatment only takes a few minutes. It isn’t painful, but you need to lie very still. You’ll be on your own in the room but you can talk to the radiographer through an intercom. In some hospitals you can have music playing while you have your treatment.  

Side effects

The side effects you might have will depend on the type of radiotherapy you’re having and how long it lasts for. Your doctor and specialist nurse will tell you more about what to expect. Always let them know about any side effects you’re having. There’s usually something they can do to make things easier.

Hair loss

Your hair in the treatment area will start to thin and fall out shortly after your treatment starts. Your doctor or nurse can show you where you will lose your hair.

Losing your hair can be scary and really upsetting. There are lots of ways to cover up with hats, bandannas, baseball caps, scarves, or wigs until it grows back. Getting a shorter haircut before it starts to fall out sometimes makes it a little easier to cope with.

It usually starts to grow back within 3 months of finishing treatment. Hair may grow back with a slightly different colour and texture and might not be as thick as before.

Although hair loss is usually temporary, for some people it can be permanent. Your specialist will usually be able to tell you if this is likely. This can be hard to deal with and you’ll be given advice and support to help you cope.

Skin changes

You might get some skin changes – a bit like sunburn – in the area being treated, usually after 3 to 4 weeks of treatment. At first it can be dry and itchy. If you’ve got pale skin it might get red. If you’ve got darker skin it can get darker. You should wash and dry the skin gently using non-perfumed soap and use only the moisturiser that the radiographer gives you. The radiographer or specialist nurse will give you advice on looking after your skin.

Tiredness

You may feel really tired towards the end of your treatment and for a few weeks after it has finished. This gradually improves after a few weeks. Try to get plenty of rest. It’s also a good idea to do some gentle exercise if you can, like taking short walks. This helps to give you more energy and keep your muscles toned.

Feeling sick

Let your doctor know if this is a problem. They can prescribe anti-sickness medicines to help.

Headaches

It’s important to tell your doctor if you have headaches. They can prescribe pain relief for you.  

During and after treatment, you might find your symptoms get a bit worse before they get better. This can be scary but it’s usually a reaction to the radiotherapy. It doesn’t mean the radiotherapy hasn’t worked or that the tumour has got worse. If it happens, let your doctor or nurse know.

Late effects

Side effects that happen months or years after treatment has finished are called late (long-term) effects. These depend on the area of the brain treated. They can include patches of hair loss, worse concentration, memory changes and difficulty learning new things, reduced hormones, increased risk of a stroke, and a second tumour.

You’ll be seen regularly for follow-up appointments and your doctors will be checking you for any late effects of treatment. Your doctors will explain more about this to you.

Chemotherapy for brain tumours

Chemotherapy is the use of special anti-cancer drugs to destroy tumour cells. You might have chemotherapy:

• to shrink a tumour to make it easier to remove with surgery
• when it’s not possible to remove the tumour completely with surgery
• during radiotherapy to make the tumour more sensitive to radiation
• after radiotherapy or surgery to reduce the chance of the tumour coming back (adjuvant chemotherapy)
• when a brain tumour has come back after treatment.  

Chemotherapy drugs

Macmillan has information on the different chemotherapy drugs that can be used, such as:

• lomustine (CCNU)
• procarbazine
• vincristine
• cisplatin or carboplatin
• temozolomide (Temodal®)
• cyclophosphamide
• ifosfamide
• etoposide

The information on these drugs is written for people of all ages, not just for young people. There are lots of other drugs that are used and your doctor or nurse can tell you more about this.

You can also call Macmillan's cancer support specialists for more information about chemotherapy drugs.

Chemotherapy can be given as a single drug or in combination with others. They can be given by injection into a vein (intravenously) or as tablets. Occasionally chemotherapy is given directly into the spine (intrathecal chemotherapy) or into the brain through a special device (ommaya reservoir). 

Another way of giving chemotherapy is for the surgeon to place a wafer containing chemotherapy in the area of the brain where the tumour was removed during the surgery. As the wafer dissolves, the chemotherapy drug is slowly released into the area of the brain that needs treatment.|  

Side effects

Chemotherapy causes side effects that usually get better when treatment is over. 

Being more at risk of an infection

You need to let your doctor or nurse know immediately if you have signs of an infection like feeling hot and shivery. This is because you can become unwell quite quickly while you are on chemotherapy.

Tiredness

This is a common side effect so it’s important to get plenty of rest. Try to balance rest with some gentle exercise like short walks if you can. This helps give you more energy and keeps your muscles toned.

Feeling sick

You’ll be given anti-sickness medicines to take regularly. Let your nurse or doctor know if the ones you’re taking aren’t working for you.

Hair loss

If you lose your hair it will usually start to grow back again after your treatment stops.

Infertility

Some chemotherapy drugs can affect your fertility. Your doctor should discuss this with you before treatment begins. 

Your doctor and nurse will tell you more about the side effects to expect depending on the chemotherapy you have. Let your doctor or nurse know about any side effects as there’s often something that can be done to control them.

Supportive treatment for brain tumours

As part of your treatment for a brain tumour you’ll probably be given drugs called steroids. You may also be given some anticonvulsant drugs to prevent fits.

Steroids

Steroids help reduce the swelling that often surrounds a brain tumour. Although they don’t treat the tumour itself, they can improve symptoms and make you feel better. Steroids are often given before and after surgery, and sometimes during or after radiotherapy and chemotherapy.

It’s important to take steroids as your doctor tells you and not to suddenly stop them. If you take steroids for more than 2 weeks, it’s important to tell your doctor about them if you are unwell (for example an infection) over the next 6 months. This is because you may need an extra course of steroids.

Side effects

If you take steroids for some time, you may have some temporary side effects. These can include:

• weight gain
• a change in the shape of your face (making it more rounded)
• indigestion
• slightly more risk of getting an infection
• mood changes (feeling ‘hyper’ or overactive or feeling low)
• increase in the sugar level in your blood – your blood or urine may be tested to check for this

Side effects can be hard to cope with, especially with all the other stuff you have to deal with. Remember – the side effects will gradually get better when the steroids are stopped, and in the meantime there are lots of people who can support you.

Anticonvulsants

Tumours in the brain can sometimes cause fits. Anticonvulsant drugs can help prevent them. You might be prescribed these before surgery, or to take on a more long-term basis. Your doctors will tell you about any side effects of these drugs.

We also have more information about:

• symptoms of brain tumours 
• having tests for brain tumours
• the brain

If you're looking for information about brain tumours in people of all ages, read our general brain tumours section.