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Pineal region tumours

Learn about brain tumours in the pineal region of the brain.

What it is

The pineal gland is in the middle of the brain, just behind the brain stem. It makes the hormone melatonin that controls sleep. Tumours in the pineal region are rare.

Tumours in this part of the brain can block the fluid channels. This can lead to a build up of fluid and an increased pressure in the brain called hydrocephalus. This causes symptoms, including headaches and sickness.

There are 2 main types of pineal region tumours:

  • tumours starting from pineal gland cells (for example pineoblastoma) 
  • germ cell tumours
pineal and pituitary glands

Germ cell tumours

Germ cell tumours grow from primitive developing cells that form in the embryo and develop into the reproductive system. They are also called embryonal tumours.

Most occur outside the brain, in the chest or abdomen. But they can develop in the brain. They are usually found near the pineal gland and the pituitary gland. Around half of these tumours are diagnosed in young people between 10 and 20 years old. 

Diagnosing pineal region tumours

Your doctor will examine you. Tests include:

  • CT or MRI scan 
  • biopsy of your tumour 
  • a lumbar puncture to take a sample of the fluid that surrounds your spinal cord
  • blood tests

Germ cell tumours make chemicals that can show in the blood. If your doctor thinks you have a germ cell tumour you have a blood test to look for:

  • alpha fetoprotein (AFP)
  • human chorio gonadotropin (HCG)
  • placental alkaline phosphotase (PLAP)

Your germ cell tumour might be picked up with this blood test. These tumour are often diagnosed when they are small.

Treatment options

Your treatment depends on your age and the type of tumour.

Surgery 

You might have surgery to place a shunt if you have hydrocephalus. The shunt allows fluid to flow properly again and to reduce the pressure in the brain. Your surgeon might take a sample of cells (biopsy) at the same time.

It is not usually possible to remove all of the tumour because surgery is the pineal area is very difficult. 

Treatment for non gem cell tumours 

Your surgeon might try to remove as much of the tumour as possible. These tumours can be low grade (slow growing) or high grade (fast growing).

Depending on the grade, you might then have radiotherapy and possibly chemotherapy. These treatments aim to stop the tumour coming back. 

You might have radiotherapy alone if you are unable to have surgery. You may have a type of radiotherapy called stereotactic radiotherapy . 

Treatment for germ cell tumours

You usually have a combination of chemotherapy and radiotherapy. This works well for some types of germ cell tumour. Some people have this treatment and do not need surgery. Other people might have an operation to remove any remaining tumour. 

Coping with pineal region tumours

Coping with a diagnosis of a brain tumour can be difficult, both practically and emotionally. It can be especially difficult if you have a rare tumour. Being well informed about your tumour and its treatment can make it easier to make decisions and cope with what happens.

Follow up

You will have regular check ups once you finish your treatment. Your doctor will examine you and ask about your general health.

This is your chance to ask questions and to tell your doctor if anything is worrying you.

How often you have check ups depends on your individual situation.

Research and clinical trials

There may be fewer clinical trials for rare types of cancer than for more common types.

It is hard to organise and run trials for rare cancers. Getting enough patients is critical to the success of a trial. The results won't be strong enough to prove that one type of treatment is better than another if the trial is too small.

The International Rare Cancers Initiative (IRCI) aims to develop more research into new treatments for rare cancers. They are designing trials that involve several countries so that more people will be available to enter trials.

Information and help

Dangoor sponsorship

About Cancer generously supported by Dangoor Education since 2010.