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Together is a new resource for anyone affected by pediatric cancer - patients and their parents, family members, and friends.
Learn MoreCraniopharyngiomas are rare brain tumors. They usually develop near the pituitary gland and hypothalamus. Craniopharyngiomas grow slowly and rarely spread to other parts of the brain.
These tumors are benign. But they can harm brain structures. Craniopharyngiomas affect endocrine function and hormone levels. They can affect vision if they press on the optic nerve.
Craniopharyngiomas usually form near the pituitary gland and hypothalamus. Tumors in this area affect endocrine function. Vision may also be affected if the tumor is near the optic nerve.
Childhood craniopharyngioma is most common in children ages 5–14 years. The tumor is rare in children younger than 2.
Craniopharyngiomas account for about 6% of childhood brain tumors. There are around 100–120 cases of pediatric craniopharyngioma in the United States each year.
Treatments for craniopharyngioma include surgery, radiation therapy, or both. Surgery may:
Radiation therapy can be used alone or with surgery.
The 10-year survival rate for craniopharyngioma is 80–90% in the United States. But long-term health problems are possible. This means it is important to work closely with your child’s care team.
Ongoing care can support your child’s quality of life.
Signs and symptoms of craniopharyngioma can include:
As the tumor grows, it may block the flow of cerebrospinal fluid. This causes a build-up of fluid within the brain called hydrocephalus.
As it grows, the tumor may block the flow of cerebrospinal fluid. This causes a fluid build-up in the brain known as hydrocephalus. The fluid causes the pathways (ventricles) in the brain to widen. This increases pressure on the brain.
Many of the symptoms of craniopharyngioma are because of increased pressure in the brain.
There are no known risk factors for craniopharyngioma.
Tests to diagnose cancers such as craniopharyngioma may include:
There is no staging system for craniopharyngiomas. These tumors are divided into 2 types:
Treatments include surgery and radiation therapy.
Targeted therapy is being studied for some types of craniopharyngioma. Your child’s care team can talk with you about the risks and benefits of each treatment.
Proton therapy may improve quality of life for children with craniopharyngioma.
Radiation therapy may be used after surgery. The type of radiation therapy depends on the tumor’s location. The care team may also consider your child’s age.
Radiation therapy is used if the tumor comes back after an earlier radical surgery. Doctors will need to watch for late effects after your child’s treatment.
Proton therapy may be a good choice in some cases. It is still being studied and is not available at every medical center.
Radiation therapy is often given in small doses. Patients usually have treatments 5 days a week for about 6 weeks.
A single dose of radiation therapy (radiosurgery) may be used in special cases.
Radiation therapy is often used with surgery. This therapy uses beams of radiation to shrink tumors and kill cancer cells. Radiation works by damaging the DNA inside cancer cells.
The 10-year survival rate for craniopharyngioma is about 80–90%.
Your child’s care team is the best source of information about your child’s case.
Craniopharyngiomas may cause changes in endocrine function or damage the optic nerve. Long-term quality of life is important when planning treatments.
Most survivors of craniopharyngioma live with complications. These may include:
Craniopharyngioma may cause problems with the endocrine system. The endocrine system is a group of glands that controls many of the body’s functions.
Life after craniopharyngioma may include problems with the endocrine system. The endocrine system is a group of glands that control many of the body’s functions, such as:
Most problems after craniopharyngioma are related to abnormal hormone levels. These are caused by damage to the pituitary gland or hypothalamus.
Hormones that may be affected include:
Your child may need hormone replacement therapy.
Pituitary Disorders: The pituitary gland is called the “master gland.” It controls many hormones and other glands. Abnormal pituitary function can lead to problems including:
These problems can happen even if your child takes hormone replacement medicines.
Hypothalamus Disorders: Damage to the hypothalamus causes hormone changes. Problems can include:
Changes in behavior and emotions are also common. They can include:
Craniopharyngioma often causes hypothalamic obesity. That means extreme weight gain caused by damage to the hypothalamus. This may be caused by:
Obesity can happen even if your child does not eat more than normal. It is hard to treat hypothalamic obesity.
Obesity increases risk for heart disease, diabetes, stroke, and metabolic syndrome. It can also increase the risk for poor physical function, joint problems, and low fitness levels.
This makes healthy habits like good nutrition and physical activity even more important for survivors.
Metabolic syndrome is a common health issue. It can affect the quality of life for survivors of childhood craniopharyngioma.
This syndrome is a group of conditions that include:
Metabolic syndrome is linked to heart disease, stroke, and diabetes.
Sleep disorders such as excessive daytime sleepiness are common among craniopharyngioma survivors. They are often caused by damage to the hypothalamus.
It is important for your child to follow healthy sleep habits. Talk with your child’s care team if they have sleep problems.
Treatments for craniopharyngioma can affect long-term brain health.
Survivors can be at higher risk of problems in brain blood vessels. These changes can sometimes lead to ischemia or stroke. Patients are also at increased risk for seizures.
Cognitive late effects may occur, too.
Classroom accommodations and school support services can help students and families cope with any educational challenges.
There are things you can do to help promote your child’s quality of life:
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Reviewed: August 2023