Craniopharyngioma Treatment

Childhood craniopharyngiomas are benign brain tumors found near the pituitary gland.

Childhood craniopharyngiomas are rare tumors usually found near the pituitary gland (a pea-sized organ at the bottom of the brain that controls other glands) and the hypothalamus (a small cone-shaped organ connected to the pituitary gland by nerves).

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Craniopharyngiomas are rare brain tumors that usually form near the pituitary gland and the hypothalamus. They are benign (not cancer) and do not spread to other parts of the brain or to other parts of the body. However, they may grow and press on nearby parts of the brain, including the pituitary gland, optic chiasm, and optic nerve. Craniopharyngiomas usually occur in children and young adults.

Craniopharyngiomas are usually part solid mass and part fluid-filled cyst. They are benign (not cancer) and do not spread to other parts of the brain or to other parts of the body. However, they may grow and press on nearby parts of the brain or other areas, including the pituitary gland, the optic chiasm, optic nerves, and fluid-filled spaces in the brain. Craniopharyngiomas may affect many functions of the brain. They may affect the hormone making process, growth, and vision. Benign brain tumors need treatment.

This summary is about the treatment of primary brain tumors (tumors that begin in the brain). Treatment of metastatic brain tumors, which are tumors formed by cancer cells that begin in other parts of the body and spread to the brain, is not covered in this summary.

Brain tumors can occur in both children and adults; however, treatment for children may be different than treatment for adults. For information about treatment for adults, see Adult Central Nervous System Tumors Treatment.

There are no known risk factors for childhood craniopharyngioma.

Craniopharyngiomas are rare in children younger than 2 years of age and are most often diagnosed in children aged 5 to 14 years. It is not known what causes these tumors.

Signs of childhood craniopharyngioma include vision changes and slow growth.

These and other signs and symptoms may be caused by craniopharyngiomas or by other conditions. Check with your child’s doctor if your child has any of the following:

• headaches, including morning headache or headache that goes away after vomiting
• vision changes
• nausea and vomiting
• loss of balance or trouble walking
• unusual sleepiness or change in energy level
• changes in personality or behavior
• increase in thirst or urination
• short stature or slow growth
• weight gain
• hearing loss

Tests that examine the brain, vision, and hormone levels are used to detect (find) childhood craniopharyngiomas.

In addition to asking about your child's personal and family health history and doing a physical exam, your child's doctor may perform the following tests and procedures:

• Neurological exam: A series of questions and tests to check the brain, spinal cord, and nerve function. The exam checks a person’s mental status, coordination, and ability to walk normally, and how well the muscles, senses, and reflexes work. This may also be called a neuro exam or a neurologic exam.
• Visual field exam: An exam to check a person’s field of vision (the total area in which objects can be seen). This test measures both central vision (how much a person can see when looking straight ahead) and peripheral vision (how much a person can see in all other directions while staring straight ahead). Any loss of vision may be a sign of a tumor that has damaged or pressed on the parts of the brain that affect eyesight.
• CT scan (CAT scan): A procedure that makes a series of detailed pictures of areas inside the body, taken from different angles. The pictures are made by a computer linked to an x-ray machine. A dye may be injected into a vein or swallowed to help the organs or tissues show up more clearly. This procedure is also called computed tomography, computerized tomography, or computerized axial tomography.
• MRI (magnetic resonance imaging) of the brain and spinal cord with gadolinium: A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the brain. A substance called gadolinium is injected into a vein. The gadolinium collects around the tumor cells so they show up brighter in the picture. This procedure is also called nuclear magnetic resonance imaging (NMRI).
• Blood chemistry studies: A procedure in which a blood sample is checked to measure the amounts of certain substances released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance can be a sign of disease.
• Blood hormone studies: A procedure in which a blood sample is checked to measure the amounts of certain hormones released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance can be a sign of disease in the organ or tissue that makes it. For example, the blood may be checked for unusual levels of thyroid-stimulating hormone (TSH) or adrenocorticotropic hormone (ACTH). TSH and ACTH are made by the pituitary gland in the brain.

Childhood craniopharyngiomas may be diagnosed and removed in the same surgery.

Doctors may think a mass is a craniopharyngioma based on where it is in the brain and how it looks on a CT scan or MRI. In order to be sure, a sample of tissue is needed.

One of the following types of biopsy procedures may be used to take the sample of tissue:

• Open biopsy: A hollow needle is inserted through a hole in the skull into the brain.
• Computer-guided needle biopsy: A hollow needle guided by a computer is inserted through a small hole in the skull into the brain.
• Transsphenoidal biopsy: Instruments are inserted through the nose and sphenoid bone (a butterfly-shaped bone at the base of the skull) and into the brain.

A pathologist views the tissue under a microscope to look for tumor cells. If tumor cells are found, as much tumor as safely possible may be removed during the same surgery.

The following laboratory test may be done on the sample of tissue that is removed:

• Immunohistochemistry: A laboratory test that uses antibodies to check for certain antigens (markers) in a sample of a patient’s tissue. The antibodies are usually linked to an enzyme or a fluorescent dye. After the antibodies bind to a specific antigen in the tissue sample, the enzyme or dye is activated, and the antigen can then be seen under a microscope. This type of test is used to help diagnose cancer and to help tell one type of cancer from another type of cancer.

Certain factors affect prognosis (chance of recovery) and treatment options.

The prognosis and treatment options depend on the following:

• the size of the tumor
• where the tumor is in the brain
• whether there are tumor cells left after surgery
• the child's age
• side effects that may occur months or years after treatment
• whether the tumor has just been diagnosed or has recurred (come back)

There is no standard staging system for childhood craniopharyngioma.

The process used to find out if cancer has spread within the brain or to other parts of the body is called staging. There is no standard staging system for childhood craniopharyngioma. Craniopharyngioma is described as newly diagnosed disease or recurrent disease.

The results of the tests and procedures done to diagnose craniopharyngioma are used to help make decisions about treatment.

Sometimes childhood craniopharyngioma comes back after treatment.

The tumor may come back in the same area of the brain where it was first found.

There are different types of treatment for children with craniopharyngioma.

Some treatments are standard (the currently used treatment), and some are being tested in clinical trials. A treatment clinical trial is a research study meant to help improve current treatments or obtain information on new treatments for patients with tumors. When clinical trials show that a new treatment is better than the standard treatment, the new treatment may become the standard treatment.

Because tumors in children are rare, taking part in a clinical trial should be considered. Clinical trials are taking place in many parts of the country. Information about ongoing clinical trials is available from the NCI website. Choosing the most appropriate treatment is a decision that ideally involves the patient, family, and health care team.

Children with craniopharyngioma should have their treatment planned by a team of health care providers who are experts in treating brain tumors in children.

Treatment will be overseen by a pediatric oncologist, a doctor who specializes in treating children with tumors. The pediatric oncologist works with other pediatric health care providers who are experts in treating children with brain tumors and who specialize in certain areas of medicine. These may include the following specialists:

• pediatrician
• neurosurgeon
• radiation oncologist
• neurologist
• endocrinologist
• ophthalmologist
• rehabilitation specialist
• psychologist
• social worker
• nurse specialist

Childhood brain tumors may cause signs or symptoms that begin before the cancer is diagnosed and continue for months or years.

Signs or symptoms caused by the tumor may begin before diagnosis and continue for months or years. It is important to talk with your child's doctors about signs or symptoms caused by the tumor that may continue after treatment.

The following types of treatment may be used:

New types of treatment are being tested in clinical trials.

This summary section describes treatments that are being studied in clinical trials. It may not mention every new treatment being studied. Information about clinical trials is available from the NCI website.

Treatment for childhood craniopharyngioma may cause side effects.

To learn more about side effects that begin during treatment for cancer, visit Side Effects.

Side effects from tumor treatment that begin after treatment and continue for months or years are called late effects. Late effects of tumor treatment may include the following:

• physical problems that affect the following:
  • brain (seizures)
  • bone and muscle growth and development
• behavior problems
• changes in mood, feelings, thinking, learning, or memory
• second cancers (new types of cancer)

The following serious physical problems may occur if the pituitary gland, hypothalamus, optic nerves, or carotid artery are affected during surgery or radiation therapy:

• obesity
• metabolic syndrome, including fatty liver disease not caused by drinking alcohol
• vision problems, including blindness
• blood vessel problems or stroke
• loss of the ability to make certain hormones

Some late effects may be treated or controlled. Life-long hormone replacement therapy with several medicines may be needed. It is important to talk with your child's doctors about the effects tumor treatment can have on your child. For more information, see Late Effects of Treatment for Childhood Cancer.

Patients may want to think about taking part in a clinical trial.

For some patients, taking part in a clinical trial may be the best treatment choice. Clinical trials are part of the medical research process. Clinical trials are done to find out if new treatments are safe and effective or better than the standard treatment.

Many of today's standard treatments are based on earlier clinical trials. Patients who take part in a clinical trial may receive the standard treatment or be among the first to receive a new treatment.

Patients who take part in clinical trials also help improve the way diseases will be treated in the future. Even when clinical trials do not lead to effective new treatments, they often answer important questions and help move research forward.

Use our clinical trial search to find NCI-supported cancer clinical trials that are accepting patients. You can search for trials based on the type of cancer, the age of the patient, and where the trials are being done. General information about clinical trials is also available.

Patients can enter clinical trials before, during, or after starting their treatment.

Some clinical trials only include patients who have not yet received treatment. Other trials test treatments for patients who have not improved. There are also clinical trials that test new ways to stop a disease from recurring (coming back) or reduce the side effects of treatment.

Clinical trials are taking place in many parts of the country. Information about clinical trials supported by NCI can be found on NCI’s clinical trials search webpage. Clinical trials supported by other organizations can be found on the ClinicalTrials.gov website.

Follow-up tests may be needed.

Some of the tests that were done to diagnose the disease or decide how to treat it may be repeated. Some tests will be repeated in order to see how well the treatment is working. Decisions about whether to continue, change, or stop treatment may be based on the results of these tests.

Some of the tests will continue to be done from time to time after treatment has ended. The results of these tests can show if your condition has changed. These tests are sometimes called follow-up tests or check-ups.

After treatment, follow-up testing with MRI will be done for several years to check if the tumor has come back.

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PDQ® Pediatric Treatment Editorial Board. PDQ Childhood Craniopharyngioma Treatment. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/types/brain/patient/child-cranio-treatment-pdq. Accessed <MM/DD/YYYY>. [PMID: 26389237]

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