Pineal region tumours

A pineal region tumour is a rare type of brain tumour. It starts in or around the pineal gland in the centre (pineal region) of the brain. The pineal gland is just behind the top of the brain stem. The pineal gland produces a hormone called melatonin. Melatonin helps control sleep patterns.

Side view of the brain

Pineal region tumours do not usually spread to other parts of the body. They may still cause problems by growing and pressing on surrounding tissue. Some pineal tumours may spread to other parts of the brain and spinal cord.

Pineal region tumours can affect children and adults. This information is about pineal region tumours in adults. The Children’s Cancer and Leukaemia Group has more information on caring for children with cancer, including brain tumours. The The Brain Tumour Charity also has information about brain tumours in children.

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

Symptoms may happen if a tumour presses on or grows into nearby areas of the brain. This can stop that part of the brain from working normally.

The pineal gland is next to one of the main fluid pathways in the brain. This means that as a pineal gland tumour grows it can lead to a blockage in the flow of brain fluid. This fluid is called cerebrospinal fluid (CSF). It can cause a build-up of pressure inside the skull, called hydrocephalus. 

Symptoms can include:

• headaches
• sickness (vomiting)
• problems with eyesight, such as difficulty looking upwards or focusing on close objects, or double vision
• problems with balance or walking
• incontinence - difficulty controlling urine (pee).

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.

Your doctor may do a neurological examination to check your nervous system by: 

• checking your reflexes and the power and feeling in your arms and legs 
• shining a light at the back of your eye to check if there is swelling
• asking you some questions to check your reasoning and memory. 

They may also: 

• arrange for you to have blood tests to check your general health.

You will then have brain scans to find out the exact position and size of the tumour. 

You may have a brain CT scan first. You also usually have an MRI brain scan.

 Having an MRI scan is important as it can give more detailed information. If you are not able to have an MRI scan, your doctor will discuss this with you. We have more information on the different types of MRI scans used to diagnose brain tumours.

You may also have the following tests:

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).

If you have a tumour that releases these markers into your blood, checking the marker levels in your blood can help assess your response to treatment. They will also be measured as part of your follow-up after treatment has finished.

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 type of pineal region tumour
• 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 risks of different treatment types. They will also explain the 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 a pineal region tumour. This depends on what type of tumour it is and whether surgery is possible. Sometimes the risks of surgery may outweigh the benefits. In this situation, you may only have a biopsy, or you may only be monitored with scans. 

If surgery is possible, the surgeon will aim to remove all or as much of the tumour as is safely possible. Your surgeon will explain your operation and what to expect.

We have more information about what to expect before and after surgery.

Radiotherapy or chemotherapy may be recommended for some types of pineal region tumours.

Radiotherapy uses high-energy rays to destroy the tumour cells and control the tumour. Chemotherapy uses anti-cancer drugs to destroy the tumour cells.

Radiotherapy may be used:

• as the main treatment, if surgery is not possible
• after surgery, if the tumour cannot be completely removed
• after surgery, to control the tumour or reduce the risk of the tumour coming back
• to treat the spinal cord, if there are signs the tumour has spread to the spine, or is at risk of spreading to the spine. 

Radiotherapy can be given in different ways. This includes external beam radiotherapy, stereotactic radiotherapy (SRT), stereotactic radiotherapy (SRT) or proton beam therapy. The best way of giving the radiotherapy will depend on your situation. Your doctor can explain more about this.

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

You may need treatment for symptoms before you have any treatment for the tumour. This might be for symptoms caused by increased pressure inside the skull (hydrocephalus).

Treatments can improve symptoms to help you feel better. When your symptoms are better controlled, it can mean it is possible to have other treatments. These usually include drugs called steroids to reduce swelling around the tumour. Some people also have surgery to reduce pressure inside the skull.

Surgery to reduce the pressure inside the skull

Your specialist doctor or nurse will explain your treatment and possible side effects. Some treatments can cause side effects that can continue and may not get better. These are called long-term effects. You may also get side effects that start months or years later. These are called late effects.

We have more information about coping with side effects of:

• radiotherapy
• chemotherapy.

Sometimes a brain tumour cannot be removed or may stop responding to treatment. 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 and providing emotional support.

We have more information about coping with advanced cancer.

Clinical trials are a type of medical research involving people. They are important because they show which treatments are most effective and safe. This helps healthcare teams plan the best treatment for the people they care for.

Trials may test how effective a new treatment is compared to the current treatment used. Or they may get information about the safety and side effects of treatments.

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.

Clinical trials also research other areas. These include diagnosis and managing side effects or symptoms. As 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.

We have more information about clinical trials.