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About Childhood Craniopharyngioma

  • Craniopharyngioma is a rare tumor that develops in the brain’s pituitary gland, a pea-sized gland that secretes hormones into the bloodstream. If it spreads to other areas of the brain, it can cause vision problems and hormone dysfunction.

    • Craniopharyngioma grows from cells that helped form the normal pituitary gland in a developing embryo.
    • A craniopharyngioma tumor can vary in size and may have cysts (fluid-filled sacs) within it. The cysts can grow very large and occasionally reach into both sides of the brain. Portions of craniopharyngiomas also can have calcium deposits.

    Children with craniopharyngioma receive advanced treatment at Dana-Farber/Boston Children's Cancer and Blood Disorders Center through the Childhood Brain Tumor Center. Our pediatric brain tumor specialists, including pediatric neuro-oncologists, neurosurgeons and neurologists, have extensive expertise in caring for children with brain tumors.

    Brain tumors can cause a variety of symptoms in children based primarily on the location of the tumor. Keep in mind that the symptoms of a brain tumor may resemble other more common conditions or medical problems. It is important to consult your child's physician for a diagnosis.

    Craniopharyngioma symptoms may include:

    • Hormone issues, including a fall-off in a child's regular growth rate, excessive drinking and urinating, and delayed or early puberty
    • Hydrocephalus, a buildup of fluid in the brain that leads to headache, nausea, and vomiting
    • Vision loss

    How We Diagnose Childhood Craniopharyngioma

    Your child’s doctor will recommend diagnostic tests based on the type of tumor suspected, your child’s symptoms, your child’s age and overall health, and results of physical and neurological examinations.

    They may order diagnostic tests, including comprehensive imaging studies and tests to check for hormone abnormalities or vision loss.

    Children with large craniopharyngiomas at the time of diagnosis may be experiencing hydrocephalus. In these situations, your child’s doctor may recommend immediate surgical removal of the tumor.

    After finishing all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to share the results and outline the best possible treatment options.

    How We Treat Childhood Craniopharyngioma

    Your child's physician will determine a specific course of treatment based on several factors, including your child's age, overall health and medical history, the type, location, and size of the tumor, and the extent of the disease.

    Craniopharyngiomas treatments include:

    • Surgery: Surgery is almost always the first step in treating a craniopharyngioma. Our doctors attempt to remove as much of the tumor as is safely possible. Even if the tumor is completely removed, the tumor can re-grow.
    • Radiation therapy: This treatment involves high-energy waves from a specialized machine that damage or shrink tumors. Radiation for craniopharyngioma is typically given daily over six weeks. Focused radiation treatments can be used to treat areas of the tumor that may remain after surgery.
    • Hormone replacement: Patients who need to have their pituitary gland removed will require hormone replacement. These children will require life-long hormone replacement under the care of an endocrinologist.

    Follow-up cancer care is critical to your child’s physical, mental, and emotional health. Beyond initial treatment, we continue to care for the physical, mental, and emotional health needs of children through our extensive pediatric cancer survivorship programs, including the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic for pediatric brain tumor survivors. These services address health and social issues, ranging from motor function evaluation and physical therapy to return-to-school and learning programs.

    Research and Clinical Trials for Childhood Craniopharyngioma

    At Dana-Farber/Boston Children’s, we have an unparalleled depth of experience in developing new treatments for rare brain tumors through clinical trials.

    Our researchers investigate pediatric brain tumor topics such as anti-tumor medications, genetic markers on tumor cells, and the long-term effects of treatment and ways to minimize these effects.

    In addition to launching our own clinical trials, we also offer trials available through collaborative groups such as the Children's Oncology Group (COG) and the Pacific Pediatric Neuro-oncology Consortium (PNOC). We are also the New England Phase I Center of the Children's Oncology Group. If your child has a progressive or recurrent tumor, she may be eligible for a number of clinical trials available through these groups, or from one of our independent clinical investigators.

    If you have questions about clinical trials, your child’s doctor can explain more about what’s available and if your child is eligible.

    Long-term Outcomes for Children with Craniopharyngioma

    The prognosis for children with craniopharyngioma is generally good, with an 80 to 90 percent chance of a cure. Recurrences can occur up to two years after surgery. Therefore, specialized ongoing follow-up care is critical.

    Childhood Craniopharyngioma Treatment Team

    Our craniopharyngioma treatment team includes specialists dedicated to diagnosing and treating this brain tumor. See a complete list of the specialists in our Childhood Brain Tumor Center.