Pineal region tumours

Pineal region tumours affect the pineal gland area of the brain. This gland is in the centre of the brain and produces a hormone called melatonin that controls sleep.

There are different types of pineal region tumours. The most common is a germ cell tumour. Symptoms may be caused by a build-up of fluid in the brain, which leads to increased pressure, or by the tumour itself. They may include:

  • headaches
  • vomiting
  • sight problems
  • balance and coordination problems
  • hormonal imbalance.

Drugs called steroids are used to control your symptoms. You will need tests to diagnose the tumours, which may include CT or MRI scans, a biopsy, or a lumbar puncture.

Your specialist will talk to you about the best treatment plan for you. They’ll explain the benefits and disadvantages and tell you about side effects and how they can be managed.

Surgery is often the main treatment for pineal region tumours, but they can sometimes be difficult to remove because of their position. If surgery is not possible, you can have radiotherapy. Radiotherapy can also be given after surgery.

Some germ cell pineal region tumours respond very well to radiotherapy and chemotherapy, so surgery isn’t needed. Chemotherapy is sometimes used to treat other types of pineal region tumours.

Pineal region tumours

Pineal region tumours are a group of different types of brain tumour. They start in or around the pineal gland which is in the centre of the brain. These tumours are rare.

Not all pineal region tumours are cancer (malignant). Malignant tumours have the ability to grow and spread to other parts of the brain or spinal cord.

Benign tumours don’t usually spread to other parts of the brain. But they may cause problems by continuing to grow and pressing on surrounding tissue.

This information is about pineal region tumours in adults and should be read along with our general information about brain tumours. We also have information on our website about brain tumours in teenagers and young adults. If you need information about brain tumours in children you can contact the Children’s Cancer and Leukaemia Group.

The pineal gland

The pineal gland is in the centre of the brain, at the back of the third ventricle (see diagram below). Ventricles are hollow spaces within the brain that the cerebrospinal fluid (CSF) flows through. CSF is the fluid that surrounds and protects the brain and spinal cord.

One of the main functions of the pineal gland  is to regulate the body’s 'internal clock' by producing the hormone melatonin. Melatonin helps control when we sleep and when we wake.

Brain cross-section showing the pineal gland
Brain cross-section showing the pineal gland

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Types of pineal region tumours

There are different types of pineal region tumours.

Germ cell tumours

The most common type of tumour in the pineal region is a germ cell tumour. Germ cells tumours are usually found in the ovaries or in the testicles. We have information about ovarian germ cell tumours and testicular cancer. Germ cell tumours can also start in other parts of the body, such as the pineal region in the brain. These tumours are more common in children, teenagers and young adults, usually males. There are two main groups:

  • germinomas
  • nongerminomatous tumours – these include embryonal carcinoma, yolk sac tumours, choriocarcinoma and teratomas.

Although germ cell tumours can grow quickly, they usually respond very well to treatment.

Pineal gland tumours

These tumours develop from the pineal gland:

  • pineocytomas
  • pineoblastomas.

Other types of tumour

  • astrocytomas – start in the main supporting cells (glial cells) in or around the pineal gland
  • meningiomas – start in the cells of the membrane that surrounds the brain and spinal cord (meninges).

We have more information about astrocytomas and meningiomas.


Causes of pineal region tumours

The cause of these tumours is unknown. But research is going on to find out more about possible causes.


Symptoms of pineal region tumours

Symptoms of tumours in the pineal region are usually due to increased pressure within the brain (raised intracranial pressure). This may be because the tumour is blocking the fluid-filled spaces of the brain called the ventricles. This leads to a build-up of cerebrospinal fluid (CSF). CSF is the fluid that surrounds and protects the brain and spinal cord. An increase in pressure can also be caused by swelling from the tumour itself.

Other symptoms may include:

  • headaches
  • vomiting (sickness)
  • problems with eyesight such as difficulty looking upwards or focusing on close objects, and double vision.

The tumour may also press on nearby areas of the brain, such as the cerebellum. This can cause problems with coordination and balance. Some people may have difficulty walking or walk awkwardly.

Germ cell tumours in the pineal region may also involve the pituitary gland, which produces different growth hormones. This may cause delayed puberty in teenagers, or other hormonal difficulties.


Tests for pineal region tumours

Your doctors need to find out as much as possible about the type, position and size of the tumour so they can plan the best treatment for you. You will have a number of different tests. The doctor will examine you and do checks on your nervous system. This includes checking your reflexes and the power and feeling in your arms and legs. They also shine a light at the back of your eye to check if the optic nerve is swollen, which can be a sign of raised pressure in the brain. Your doctor may ask some questions to check your reasoning and memory.

You will also have blood tests to check your general health and to see how well your kidneys and liver are working.

You will have a CT scan or MRI scan to find out the exact position and size of the tumour. You may also have a biopsy and a lumbar puncture.

CT scan

A CT (computerised tomography) scan uses x-rays to build a three-dimensional picture of the inside of the body. You may be given either a drink or injection of dye. This is to make certain areas of the body show up more clearly. We have more detailed information about having a CT scan.

MRI scan

This scan uses magnetism to build up a detailed picture of areas of your body. You may be given an injection of dye, into a vein, to improve the images from the scan. We have more detailed information about having an MRI scan.

Biopsy

Sometimes a sample of cells from the tumour (biopsy) is taken and examined under a microscope. You will need an operation to have a biopsy. Sometimes the biopsy and surgery to remove the tumour is done at the same time.

The neuro (brain) surgeon makes a small hole in the skull and passes a fine needle through this and into the tumour. They remove a small sample of tissue, which is examined to find out the type of tumour and the grade of the cells.

The grade of the tumour is how slowly or quickly the cells may grow. Knowing the type of tumour and its grade helps the doctors to plan the best treatment for you.

Not everyone will need a biopsy. For example, some germ cell tumours can be diagnosed with a scan and blood test. Your doctor will explain if it’s necessary in your situation.

Blood tests

You will usually have blood tests to check your hormone levels, particularly if there are signs that the pituitary gland is affected. You also have blood tests to check your general health.

Some germ cell tumours produce and release certain chemicals or markers into the blood. These are called tumour markers and can be measured with a blood test.

Lumbar puncture

You may need a test called a lumbar puncture. Your doctor removes a sample of the fluid that surrounds the brain and the spinal cord, called the cerebrospinal fluid (CSF). This is checked to see if there are any tumour cells in the fluid.

The doctor numbs the skin on your back with local anaesthetic. They pass a needle is through the skin and using a syringe withdraw a small amount of CSF.

A lumbar puncture cannot always be done if you have raised intracranial pressure. You might need to have a small operation to remove some cerebrospinal fluid first. Or you may have the lumbar puncture later on in your treatment.


Treatment for pineal region tumours

The main treatments for pineal region tumours are surgery, radiotherapy and sometimes chemotherapy. Your treatment depends mainly on the type of pineal region tumour you have. Other important factors are the size, position and grade (how slowly or quickly it grows) of the tumour, and your general health. Your specialist and a team of experts (called the multidisciplinary team), will consider all these before deciding on the best treatment for you.

Your specialist doctor and nurse will talk to you about your treatment options. They‘ll explain the aims of your treatment, what it involves and the benefits and disadvantages. They will also talk to you about the risks and side effects.

You will have time to talk this through with them before you make any treatment decisions. You may be given a choice of treatment options. Let your specialist know if you need more information or time.

Surgery

If possible, surgery is often the main treatment. But sometimes the position of the tumour makes it too difficult to reach and surgery would not be safe. There are other options if surgery is not suitable. Some germ cell tumours respond very well to treatment with radiotherapy and chemotherapy, so surgery is not needed.

The aim of surgery is to remove as much of the tumour as possible without damaging the surrounding brain tissue. Your surgeon will explain what your operation will involve. They will talk to you about the possible complications and risks.

After surgery you may need extra support to help you recover. This may be from a physiotherapist who can help you to improve your balance, walking or strength. Occupational therapists can provide equipment and help you become more independent.

It can take a while to recover so it’s important to take good care of yourself. Get plenty of rest, try to eat well and follow the advice given by your surgeon and specialist nurse.

Some people may need a small operation to control raised intracranial pressure before treatment begins. If you have raised pressure because of a build-up of CSF, you may need a tube (shunt) inserted into the brain to drain off the excess fluid. Or you may have a small operation that helps create a new channel for the fluid to drain into. This is called an endoscopic third ventriculostomy (ETV).

Radiotherapy

Radiotherapy uses high-energy x-rays to destroy the cancer cells. Your cancer doctor (oncologist) will tell you how long your treatment will last and the type of radiotherapy you will have.

Radiotherapy may be used:

  • as the main treatment for germinomas
  • as the main treatment if surgery isn’t possible
  • to destroy any remaining cancer cells after surgery to remove the tumour.

If there are signs the cancer has spread to the spine, you will have radiotherapy to the spinal cord as well. Radiotherapy makes you feel very tired and this can carry on for a few weeks, or longer, after it finishes. Try to get plenty of rest and balance this with some gentle activity, such a short walks, which can help you to feel less tired.

The skin in the treated areas may become itchy and red or darker. You will lose the hair in the area being treated. This usually grows back again after 2 to 3 months. We have more information about coping with hair loss.

Your cancer doctor and specialist nurse will talk to you about the side effects of radiotherapy and how they are managed. They will also explain the risk of late side effects. These are side effects that sometimes start months or years after radiotherapy.

Chemotherapy

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It is often used to treat germ cell tumours.

Chemotherapy is sometimes given to treat other types of pineal region tumours. This may be as part of a clinical trial.

Side effects include being more at risk of infection, tiredness, hair loss, feeling sick and a sore mouth. Your cancer doctor or nurse will talk to you about the immediate side effects and ways of managing them. They will also discuss any possible long-term effects.

Steroids

Steroids are drugs that reduce the swelling around a tumour. You may be given them before or after surgery or during radiotherapy. They can improve your symptoms and help you feel better.

Side effects include indigestion, weight gain, restlessness, agitation and sleep disturbance. Let your doctor or nurse know if these are causing problems or if you notice any other effects. Taking steroids with food can help reduce indigestion.

It’s very important to take steroids exactly as your doctor has prescribed them.


Driving

You may not be allowed to drive for a period of time. Although this can be upsetting, it’s important to follow the advice you are given.

You will need to contact the Drivers and Vehicle Licensing Association (DVLA) if you live in England, Scotland or Wales. If you live in Northern Ireland you will need to contact the Driver and Vehicle Agency (DVA). They will advise you of any restrictions on your right to drive:

  • The Drivers and Vehicle Licensing Agency (DVLA) has information about driving with a medical condition if you live in England, Scotland or Wales. Visit GOV.UK or call 0300 790 6806.
  • The Driver and Vehicle Agency (DVA) has information about driving with a medical condition if you live in Northern Ireland. Visit nidirect or call 0845 4024 000.

If you’re not sure what you should do, check with your cancer doctor or specialist nurse. They will explain things to you.


Follow-up

After your treatment has finished, you’ll have regular check-ups, tests and scans. These appointments are a good opportunity to talk to your doctor about any worries or problems you have.

Many people find they get very anxious before appointments. This is natural. It can help to get support from family, friends, your specialist nurse or one of the organisations listed on our database. You can also talk things over with one of our cancer support specialists on 0808 808 00 00.