Pineal Tumor

What is a pineal tumor?

A pineal tumor is a tumor that forms in the pineal gland . The gland is a tiny gland in the middle of your head. It's surrounded by your brain. It makes a hormone called melatonin that affects your sleep-wake cycles. Pineal tumors are very rare tumors. They happen most often to children and to adults younger than 40.  

Pineal tumors can be one or a mix of several different types. They can also be slow growing or fast growing. The World Health Organization (WHO) has a grading system for brain tumors. They are grouped by grade I, II, III, or IV. Grade I is the slowest growing. Grade IV is the most aggressive and grows and spreads faster. Tumors of the pineal gland may be one of these types: 

  • Pineocytoma. These are slow-growing (grade I or II). These tumors usually appear between ages 20 and 64 . But they can happen to a person at any age. People with pineocytomas tend to have a good outcome.  
  • Pineal parenchymal tumor. These are intermediate-grade (grade II or III). Pineal parenchymal tumors and papillary pineal tumors may happen at any age. 
  • Papillary pineal tumor . These are intermediate-grade (grade II or III). 
  • Pineoblastoma. These are very rare, aggressive, and fast-growing (grade IV). They're almost always cancer. These tumors most often affect people under 20 years of age.  
  • Mixed pineal tu mor. These are a combination of slow- and fast-growing cell types 

Pineal tumors are not always cancer. But they still cause problems as they grow because they  press against other parts of the brain and can block the normal flow of cerebral spinal fluid. This is the fluid that surrounds and cushions the brain. The blockage raises intracranial pressure (ICP), the pressure inside your skull.

What causes a pineal tumor?

Researchers don't know what causes pineal tumors. Your genes and your environment may play a role. In some cases, exposure to radiation or gene problems may increase the risk.

What are the symptoms of a pineal tumor?

Fast growing tumors may cause worse symptoms. Some of the common signs and symptoms of a pineal tumor may include: 

  • Headaches (common) 
  • Nausea and vomiting 
  • Vision changes 
  • Trouble with eye movements 
  • Tiredness 
  • Memory problems  
  • Balance or coordination problems

The symptoms of a pineal tumor can be a lot like those of other health problems. It's important to see a healthcare provider for a diagnosis

How is a pineal tumor diagnosed?

Your doctor will talk with you about your personal and family health history and the symptoms you've been having. Your doctor will do a physical exam that includes a neurologic exam. Your doctor may test your reflexes, muscle strength, and eye and mouth movement and coordination.  

If a doctor thinks you may have a pineal tumor, you may need tests, such as: 

  • MRI. MRIs use radio waves, magnets, and a computer to make detailed images of the brain and spinal cord.  
  • Biopsy. Tumor cells are removed and sent to a lab for testing. This is done to find out the type and grade of the tumor.  
  • Spinal tap (lumbar puncture). The doctor uses a thin needle that's put between the bones of your spine to take out a small amount of CSF. The sample is tested for tumor cells and other substances. 
  • Blood tests. These can be used to measure levels of substances such as melatonin in your blood.

You may first see your primary doctor. He or she may then refer you to a doctor that specializes in brain problems. This may be a neurologist, neurosurgeon, or neuro-oncologist.

How is a pineal tumor treated?

These tumors are quite rare. It may be hard to find a doctor with experience in treating them. If you've been diagnosed with a pineal tumor you may want to see another doctor to get a second opinion. This may help you better understand your treatment options and feel good about the treatment choices you make.

The treatment for your pineal tumor will depend on the size, location, type, and grade of the tumor. It will also depend on whether the tumor is causing problems by pressing on your brain and if it has spread to the CNS.

Surgery is often needed to remove a pineal tumor. Sometimes you may need radiation therapy or chemotherapy after surgery. You'll work with your medical team to decide on the best treatment plan for you.

You may need to have a small plastic tube (shunt) put into your skull to drain extra CSF. It's used to drain CSF from your head. This helps lower the pressure in your head (intracranial pressure) and ease symptoms. 

Pineal tumors may be hard to remove with surgery because they're so deeply and centrally located in the brain. In some cases, doctors use a computer to help them focus high-powered radiation on the exact area of the tumor. This is called a stereotactic radiosurgery, but no cutting is involved.

After treatment, you will likely need to have regular follow-up MRI scans to watch for signs that the tumor has come back .

Key points about pineal tumor

  • A pineal tumor is a rare tumor of your pineal gland in your head . The pineal gland makes melatonin, a substance that regulates your sleep-wake cycle.  
  • Pineal tumors can happen at any age, but they tend to happen in children and young adults. 
  • The cause is unknown. 
  • Pineal tumors can be slow-growing or fast-growing. 
  • These tumors may cause problems by pressing against other parts of the brain. 
  • Pineal tumors may block the normal flow of CSF. This causes increased pressure inside the head . 
  • You may need surgery, radiation, chemotherapy, or a combination for a pineal tumor. 
  • Many people with a pineal tumor have a good outcome.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

  • Know the reason for your visit and what you want to happen.
  • Before your visit, write down questions you want answered.
  • Bring someone with you to help you ask questions and remember what your provider tells you.
  • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
  • Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
  • Ask if your condition can be treated in other ways.
  • Know why a test or procedure is recommended and what the results could mean.
  • Know what to expect if you do not take the medicine or have the test or procedure.
  • If you have a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your provider if you have questions.
Medical Reviewer: Richard LoCicero MD
Medical Reviewer: Kim Stump-Sutliff RN MSN AOCNS
Medical Reviewer: Lu Cunningham
© 2000-2022 The StayWell Company, LLC. All rights reserved. This information is not intended as a substitute for professional medical care. Always follow your healthcare professional's instructions.
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