Pineal region tumours

Pineal region tumours are a type of brain tumour. They start in or around the pineal gland in the centre of the brain.

The pineal gland produces a hormone called melatonin. Melatonin helps control sleep patterns.

Pineal tumours do not usually spread to other parts of the body. But they may cause problems by continuing to grow and pressing on surrounding tissue.

This information is about pineal region tumours in adults. For more information about brain tumours in children, contact the Children’s Cancer and Leukaemia Group.

As a tumour grows, it can press on or grow into nearby areas of the brain. This can cause symptoms because it stops that part of the brain from working normally. Symptoms can also happen because the tumour causes a build-up of pressure inside the skull. This is called raised intracranial pressure.

Raised intracranial pressure is usually caused by a build-up of cerebrospinal fluid (CSF). Pineal tumours sometimes block the flow of CSF in the brain. This is called hydrocephalus.

Symptoms can depend on the size and position of the tumour and how slowly or quickly it grows. They may develop suddenly or slowly over months or even years. Some people might not have any symptoms. Instead, the tumour may be found during tests for something else.

Common symptoms include:

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

Other possible symptoms include:

• problems with movement and balance
• difficulty walking or walking awkwardly.

Germ cell tumours in the pineal region may sometimes also affect the pituitary gland. This is a small, oval-shaped gland that produces different hormones. Hormones control certain processes in our body, such as growth. Germ cell tumours may delay puberty in teenagers, or cause other hormonal imbalances.

We have more information about possible symptoms of a brain tumour.

Your doctors need to find out as much as possible about the tumour so they can plan your treatment.

You will have:

• a brain MRI scan or sometimes a CT scan to find out the exact position and size of the tumour.

You may also have:

• a biopsy, to take a small sample of the tumour to test
• a lumbar puncture, to collect a small sample of cerebrospinal fluid (CSF) to test.

Your doctor may also:

• check your reflexes and the power and feeling in your arms and legs
• shine a light at the back of your eye to check if there is swelling
• ask you some questions to check your reasoning and memory
• arrange for you to have blood tests to check your general health and to see how well your kidneys and liver are working.

If there are signs that the pituitary gland is affected, you will also usually have blood tests to check your hormone levels.

Some germ cell tumours make chemicals called tumour markers. A sample of your blood or CSF may be tested for these. The main tumour markers made by germ cell tumours are:

• AFP (alpha-fetoprotein)
• hCG (human chorionic gonadotrophin).

Being diagnosed with a brain tumour can make you feel shocked, frightened, angry or upset. There is no right or wrong way to feel. It may help to get support from family, friends or a support organisation.

Macmillan is also here to support you. If you would like to talk, you can:

• Call the Macmillan Support Line on 0808 808 00 00
• Chat to our specialists online
• Visit our brain cancer forum to talk with people who have been affected by brain tumours, share your experience, and ask an expert your questions.

You may also want to get support from a brain tumour charity, such as:

• Brain Tumour Action
• The Brain Tumour Charity
• Brainstrust.

Most people diagnosed with a brain tumour will not be allowed to drive for a time after their diagnosis. Your doctor, surgeon or specialist nurse will tell you if this applies to you. 

If you have a driving licence, you must tell the licensing agency you have been diagnosed with a brain tumour.

You could be fined if you do not tell them. You could also be prosecuted if you have an accident.

The main treatments for pineal region tumours include surgery, radiotherapy and sometimes chemotherapy. Your treatment depends mainly on the type of pineal region tumour you have. It also depends on:

• the size and position of the tumour
• the grade
• the symptoms you have.

A team of specialists will plan your treatment. Your specialist doctor and nurse will explain the aims of your treatment and what it involves. They will talk to you about the benefits and disadvantages of different treatment types. They will also explain the risks and side effects.

You may be given a choice of treatment options. You will have time to talk about this with your hospital team before you make any treatment decisions.

You will need to give permission (consent) for the hospital staff to give you the treatment. Ask any questions about anything you do not understand or feel worried about. Tell your specialist if you need more information or more time to decide on a treatment.

Surgery is often the main treatment for pineal region tumours.

Before having surgery to remove the tumour, you might need to have a build-up of cerebrospinal fluid (hydrocephalus) drained. This relieves any pressure in the brain. When the pressure has been relieved, you may have surgery to remove your tumour. Your surgeon will explain your operation and what to expect.

Radiotherapy and chemotherapy may be used after surgery, depending on the type of tumour and how much of it has been removed. Radiotherapy uses high-energy rays to destroy the tumour cells. Chemotherapy uses anti-cancer drugs to destroy the tumour cells.

Radiotherapy and chemotherapy are very effective in treating some germ cell tumours, so surgery may not always be needed.

Radiotherapy may be used:

• as the main treatment
• as the main treatment, if surgery is not possible
• after surgery, if the tumour cannot be completely removed
• after surgery, to reduce the risk of the tumour coming back
• to treat the spinal cord, if there are signs the tumour has spread to the spine
• with chemotherapy, to treat some pineal region tumours.

A type of radiotherapy called stereotactic radiotherapy (SRT) can sometimes be used to treat pineal region tumours.

Chemotherapy is often used to treat germ cell tumours. It is also sometimes used to treat other types of pineal region tumours. This may be as part of a clinical trial. Your doctor will explain whether chemotherapy might be suitable.

You may need treatment for symptoms before you have any treatment for the tumour. You may also need your symptoms managed during your main treatment, or for a while after it has finished.

You may have treatment to reduce pressure inside the skull. This can improve symptoms and may help you feel better.

You may have:

• drugs called steroids to reduce swelling around the tumour
• an operation that helps create a new channel for the fluid to drain away – this is called an endoscopic third ventriculostomy (ETV)
• surgery to place a long, thin tube, called a shunt – this lets some of the fluid drain from the brain to another area of the body, to reduce pressure inside the skull
• drugs called anti-convulsants to prevent seizures.

Sometimes a brain tumour cannot be removed or controlled anymore. If this happens you can still have treatment for any symptoms. You will have supportive care (sometimes called palliative care) from a specialist doctor or nurse who is an expert at managing symptoms.

We have more information about coping with advanced cancer.

Clinical trials are medical research trials involving people. Doctors may use clinical trials to test new treatments, find new drugs, or improve the way treatments are given.

Because these tumours are rare, there may not always be a relevant clinical trial happening. If there is, your doctor or nurse may ask you to think about taking part.

They will give you information about the clinical trial so that you understand what it means to take part. If you decide not to take part in a trial, your specialist doctor and nurse will respect your decision. You do not have to give a reason for not taking part. Your decision will not change your care. Your doctor will give you the standard treatment for the type of tumour you have.

We have more information about clinical trials.