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Craniopharyngioma - Childhood - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Craniopharyngioma. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

Craniopharyngioma is a type of central nervous system (CNS) tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it is usually fast-growing and can spread to other parts of the body. A benign tumor means the tumor will not spread, and it is usually slower-growing. Craniopharyngioma is a benign tumor that is usually slow-growing and very unlikely to spread.

About the central nervous system

The brain and spinal cord make up the CNS, where all vital functions of the body are controlled. The brain is the center of thought, memory, and emotion. It controls the five senses, which include smell, touch, taste, hearing, and sight. It also controls movement and other basic body functions, including consciousness, heartbeat, circulation, and breathing. The spinal cord is made up of nerves that carry information from the body to the brain and from the brain to the body. When a tumor grows in the CNS, it can affect a person’s thought processes and/or movements. A tumor in the CNS can sometimes be difficult to treat because the tissue around the tumor may be vital to the body’s functioning. However, treatment for craniopharyngioma has a high rate of success.

Craniopharyngioma starts near the pituitary gland in a part of the brain called the suprasellar region. This region is the area of the brain just above the sella, the part of the skull where the pituitary gland is located. The pituitary gland is an important gland in the brain and is often called the “master endocrine gland” because it produces several different hormones that affect how the body functions.

About craniopharyngioma

Craniopharyngioma is a slow-growing tumor that can grow for many years before it is found. It can be solid and/or cystic, which means the tumor has a closed pouch or sac that contains fluid made by the tumor. The solid part often contains areas of calcium that can easily be seen on a CT scan. The cystic part of the tumor often contains very high amounts of protein.

This section covers craniopharyngioma that occurs in children. For information about craniopharyngioma in adults, read the guide to brain tumors.

Looking for More of an Overview?

If you would like additional introductory information, explore these related items. Please note these links take you to other sections on Cancer.Net:

  • ASCO Answers Fact Sheet: Read a one-page fact sheet (available as a PDF) that offers an easy-to-print introduction to CNS tumors in children.
  • Cancer.Net Patient Education Videos: View short videos led by ASCO experts in childhood tumors and cancers and brain tumors that provide basic information and areas of research.

To continue reading this guide, use the menu on the side of your screen to select another section.

Craniopharyngioma - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find information about how many children are diagnosed with craniopharyngioma each year and some general survival information. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

Approximately 766 children younger than 20 are diagnosed with craniopharyngioma each year in the United States. Craniopharyngioma accounts for approximately 6% of all CNS tumors in children younger than 15. More than 50% of people with craniopharyngioma are younger than 18, with most being diagnosed between the ages of 5 and 10. The second most common age range is between the ages of 40 and 60.

The five-year survival rate is the percentage of people who survive at least five years after the tumor is detected, excluding those who die from other diseases. The five-year survival rate for children with craniopharyngioma is higher than 90%.

Survival statistics should be interpreted with caution. These estimates are based on data from thousands of children with this type of tumor, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with craniopharyngioma. Because the survival statistics are measured in five-year intervals, they may not represent advances made in the treatment or diagnosis of this tumor or longer-term survival rates. Learn more about understanding statistics.

Statistics adapted from the Central Brain Tumor Registry of the United States and the National Cancer Institute.

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Craniopharyngioma - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find out more about the factors that increase the chance of developing craniopharyngioma. To see other pages, use the menu on the side of your screen.

A risk factor is anything that increases a person’s chance of developing a tumor. Although risk factors often influence the development of a tumor, most do not directly cause a tumor. Some people with several risk factors never develop a tumor, while others with no known risk factors do.

The cause of craniopharyngioma is not known, and there are no proven risk factors.

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Craniopharyngioma - Childhood - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

Children with craniopharyngioma may experience any of the symptoms or signs listed below. Sometimes, children with craniopharyngioma do not show any of these symptoms, or these symptoms may be caused by another medical condition not related to the tumor.

Symptoms of craniopharyngioma can be caused by pressure building up in the brain, or by the tumor pressing on nerves or blood vessels so that the brain cannot function properly in those areas. Generally, craniopharyngioma is not diagnosed until a child has symptoms.

General symptoms include:

  • Headaches, which may be severe and may be worse in the early morning
  • Nausea and/or vomiting
  • Difficulty with balance
  • Increased sleepiness or fatigue
  • Mood or behavior changes

Location-specific symptoms include:

  • Vision changes, blurriness, or loss of peripheral vision
  • Excessive thirst
  • Increased urination
  • Slow or halted growth
  • Excessive weight gain
  • Early or delayed puberty

If you are concerned about one or more of the symptoms or signs on this list, please talk with your child’s doctor. Your doctor will ask how long and how often your child has been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If a tumor is diagnosed, relieving symptoms remains an important part of your child’s care and treatment. This may also be called symptom management or supportive care. Be sure to talk with the health care team about symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section helps explain what tests and scans may be needed to learn more about the cause of the symptoms. Use the menu on the side of your screen to select Diagnosis, or you can select another section, to continue reading this guide.

Craniopharyngioma - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

In diagnosing craniopharyngioma, your child’s doctor may consider different factors when choosing tests, including:

  • Child’s age and medical condition
  • Type of tumor suspected
  • Signs and symptoms
  • Previous test results

The tests listed below may be used to diagnose craniopharyngioma. This list describes options for diagnosing craniopharyngioma, and not all tests listed will be used for every person.

Physical examination. The doctor will examine your child’s head and body and ask questions about the symptoms he or she is experiencing and his/her medical history. This may also include tests to check your child’s vision and CNS function.

Blood tests. The doctor may recommend different blood tests, including tests that measure the levels of certain hormones, to help determine whether there is reason to look for a brain tumor.

Results of the physical examination and blood tests may suggest that imaging tests are needed to look for a craniopharyngioma. There are two main types of imaging tests used to find craniopharyngioma.

Computed tomography (CT or CAT) scan. A CT scan creates a three-dimensional picture of the brain with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows abnormalities, including tumors. Sometimes, a special dye called a contrast medium is given during the scan to provide better detail. This dye is injected into a patient’s vein.

Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the brain and/or spinal column. An MRI scan can also be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye is injected into a patient’s vein.

Biopsy.  A biopsy is the removal and examination of a small piece of tumor. A neurosurgeon is a doctor who specializes in CNS surgery. For craniopharyngioma, this means that a neurosurgeon removes a sample of the tumor or the entire tumor so that a pathologist can look at it under a microscope. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. A neuropathologist is a pathologist who specializes in CNS tissues and diseases. During the surgery, a small piece of tumor may be removed at first and analyzed by the pathologist so that the surgeon knows what kind of tumor it is. Most neurosurgeons will try to remove as much of the tumor as possible once they know that it is a craniopharyngioma (see Treatment Options).

After diagnostic tests are done, your child’s doctor will review all of the results with you. 

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Craniopharyngioma - Childhood - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will learn that because of the nature of craniopharyngioma, doctors do not commonly use stage to describe this tumor.

In cancer, staging is typically how doctors describe the extent of disease in a person’s body. However, craniopharyngioma rarely, if ever, spreads to parts of the body far from where it started. Therefore, there is no standard staging system for this type of tumor.

The next section helps explain the treatment options for craniopharyngioma. Use the menu on the side of your screen to select Treatment Options, or you can select another section, to continue reading this guide.

Craniopharyngioma - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will learn about the different ways doctors use to treat children with craniopharyngioma. To see other pages, use the menu on the side of your screen.

To take advantage of special expertise necessary to treat a brain tumor, children with brain tumors should be treated at a specialized pediatric center. Doctors at these centers have extensive experience in treating children with brain tumors and have access to the latest technology. A doctor who specializes in treating children with tumors is called a pediatric oncologist. A doctor who specializes in treating children with brain tumors is called a pediatric neuro-oncologist. In many cases, a team of doctors provides care to a child and the family; this is called a multidisciplinary team. Pediatric treatment centers often have extra support services for children and their families, such as child life specialists, nurse specialists, nutritionists, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Treatment overview

Treatment for craniopharyngioma has a high rate of success. Descriptions of the treatment options for craniopharyngioma are listed below. The treatment plan used depends on whether the tumor can be completely removed by surgery. If the tumor cannot be completely removed, radiation therapy is usually recommended. However, the side effects of radiation therapy must be considered when deciding on the best treatment for very young children. Radiation therapy can cause age-related permanent learning and memory problems, as well as slow the metabolism and decrease levels of hormones needed for the body to function normally.

There are treatments being studied in clinical trials for patients whose tumors cannot be completely removed, but who would like to avoid or delay the need for radiation therapy. Talk with your doctor whether this might be an option for your child. Your child’s care plan may also include treatment for symptoms and side effects, an important part of cancer care.

Take time to learn about all of your child’s treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your child’s doctor and what your child can expect during treatment. Learn more about making treatment decisions.

Surgery

Surgery is the most common treatment for craniopharyngioma. A neurosurgeon is a doctor who specializes in removing brain tumors.

The goal of surgery is to confirm the diagnosis and remove as much tumor as possible. Complete removal of craniopharyngioma may also be called a complete resection. This is possible for about 70% to 85% of children.  

Side effects of surgery depend on the tumor’s location. Surgery may damage parts of the brain near the tumor, affecting hormone function, metabolism, vision, arm and leg movement, or consciousness. Sometimes, the tumor may have grown into the optic chiasm, which is an area of the brain that controls vision, or major blood vessels, making it difficult to remove the tumor. Some tumors cannot be removed using surgery because of their location and can only be biopsied. These tumors are called inoperable, and the doctor will recommend treating the tumor in another way.

The doctor may recommend additional treatment following surgery. Research studies have shown that people with a tumor that was partially removed who received radiation therapy live as long as those who had a complete removal of the tumor, and often have fewer side effects, such as stroke, severe bleeding, or damage to the hypothalamus. The hypothalamus is a small structure that regulates the pituitary gland’s production of hormones and many other body functions. Talk with your child’s doctor before treatment begins about the potential side effects for your child based on the recommended treatment plan.

Learn more about surgery.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy tumor cells. A doctor who specializes in giving radiation therapy to treat a tumor is called a radiation oncologist. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. Because radiation therapy can interfere with the normal growth and development of a child’s brain, advanced treatment planning techniques should be used to reduce the amount of radiation to the areas of the brain not affected by the tumor.

Radiosurgery is a way to deliver a single, high dose of radiation therapy to the tumor while sparing other areas of the brain. This technique requires a head frame to help localize the tumor, so doctors know exactly where to deliver the radiation treatment. This type of radiation is generally used for recurrent craniopharyngioma (see below).

Short-term side effects from radiation therapy may include fatigue, mild skin reactions and nausea. These side effects go away soon after treatment is finished. More permanent side effects can include hair loss, learning difficulties, low hormone levels, weight gain, and memory problems. Talk with your doctor about possible short- and long-term effects of your child’s treatment plan.

Learn more about radiation therapy.

Hormone replacement therapy (HRT)

HRT is the use of medication to replace hormones when the body cannot produce enough on its own. It is often necessary for children with craniopharyngioma because the tumor or its treatment may damage parts of the brain that make hormones, particularly the pituitary gland and the hypothalamus. An endocrinologist is a doctor who specializes in problems with glands and the endocrine system. This specialist will work with you and your child to determine the hormonal therapy that is needed.

Getting care for symptoms and side effects

A brain tumor and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the tumor, an important part of care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care can help a person at any stage of illness. People often receive treatment for the tumor and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, and other therapies. Your child may also receive palliative treatments similar to those meant to eliminate the tumor, such as surgery and radiation therapy. Talk with your child’s doctor about the goals of each treatment in the treatment plan.

Before treatment begins, talk with the health care team about the possible side effects of your child’s specific treatment plan and supportive care options. Be sure to tell your child’s doctor or another health care team member if your child is experiencing a problem during and after treatment so it is addressed as quickly as possible. Learn more about palliative care.   

Chance of the tumor coming back or worsening

When the tumor cannot be seen on an MRI scan, this is called “no evidence of disease” or NED. The uncertainty of whether the tumor will come back causes many patients and families to feel worried or anxious. While the chance of the tumor coming back may be low, it is important to talk with your child’s doctor about the possibility of the tumor returning. Understanding the risk of recurrence and the treatment options may help you and your family feel more prepared if the tumor does return. Learn more about coping with the fear of recurrence

If the tumor does return or grow back after the original treatment, it is called a recurrent tumor. When a recurrence happens, craniopharyngioma most commonly comes back in the same place (called a local recurrence) or nearby (regional recurrence).

When this occurs, more tests may be done to learn as much as possible about the recurrence. After testing is done, your child’s doctor will talk about your treatment options. Often the treatment plan will include the therapies described above such as surgery and/or radiation therapy, but the same type of radiation therapy cannot usually be used more than once. There are also treatments being studied in clinical trials for patients with recurrent or worsening craniopharyngioma. Talk with your doctor whether this might be an option for your child.

When a tumor recurs, patients and their families often experience emotions such as disbelief or fear. Families are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with a recurrence.

If treatment fails

Although treatment is successful for the vast majority of children with craniopharyngioma, sometimes it is not. If a child’s tumor cannot be cured or controlled, this is called an advanced or terminal tumor. This diagnosis is stressful, and it may be difficult to discuss. However, it is important to have open and honest conversations with your child’s doctor and health care team to express your family’s feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Hospice care is a type of palliative care for people who are expected to live less than six months. It is designed to provide the best possible quality of life for people who are near the end of life. Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced care planning.

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.

The next section helps explain clinical trials, which are research studies. Use the menu on the side of your screen to select About Clinical Trials, or you can select another section, to continue reading this guide.

Craniopharyngioma - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

Doctors and scientists are always looking for better ways to treat children with a brain tumor. To make scientific advances, doctors develop research studies involving volunteers, called clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment.

Children who participate in clinical trials are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than the standard treatment. 

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your child’s doctor about clinical trials regarding side effects.

Patients decide to participate in clinical trials for many reasons. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating craniopharyngioma. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with craniopharyngioma.

Most children with craniopharyngioma do not receive treatment in clinical trials if the surgeon can remove all of tumor or if their age and tumor size does not limit the use of radiation therapy. Generally, clinical trials provide treatment options when a tumor cannot be surgically removed, for those who want to delay or avoid radiation therapy, or for those with tumors that have grown back after surgery and/or radiation therapy.

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options, so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

For specific topics being studied for craniopharyngioma, learn more in the Latest Research section.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that parents of patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Cancer.Net offers a lot of information about clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of tumor.

The next section helps explain the areas of research going on today about craniopharyngioma. Use the menu on the side of your screen to select Latest Research, or you can select another section, to continue reading this guide.

Craniopharyngioma - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will read about the scientific research being done now to learn more about craniopharyngioma and how to treat it. To see other pages, use the menu on the side of your screen.

For craniopharyngioma, due to the general success of surgery and radiation therapy, research focuses on treatments for recurrent tumors or tumors that are unable to be completely removed by surgery. There is also ongoing research into the biology of craniopharyngioma to understand what allows the tumor to grow. Always talk with your child’s doctor about the diagnostic and treatment options best for your child.

Different methods of giving drugs.  Interferon given by weekly injection under the skin, called pegylated interferon, and chemotherapy or interferon (Roferon-A, Intron A, Alferon) injected directly into the tumor cyst (if there is a large one), are being looked at to treat some patients with craniopharyngioma. Interferon is a type of biologic therapy. Biologic therapy is designed to target areas on the tumor cells or the tumor blood vessels to try to stop the tumor from growing. Interferon is also part of the body’s natural immune system.

Improved methods of giving radiation therapy. For patients with a tumor that cannot be completely removed during surgery, doctors are studying new techniques for giving radiation therapy. The use of three-dimensional radiation techniques allows high doses of radiation therapy to be delivered to the tumor with lower doses to healthy brain tissue. These methods may help reduce damage to healthy tissues.

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding craniopharyngioma, explore these related items that take you outside of this guide:

  • To find clinical trials specific to your diagnosis, talk with your child’s doctor or search online clinical trial databases now.
  • Visit ASCO’s CancerProgress.Net website to learn more about the historical pace of research for childhood tumors and cancers. Please note this link takes you to a separate ASCO website. 

The next section addresses how to cope with the symptoms of the disease or the side effects of its treatment. Use the menu on the side of your screen to select Coping with Side Effects, or you can select another section, to continue reading this guide.

Craniopharyngioma - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of a brain tumor, but it may help to know that preventing and controlling side effects is a major focus of your child’s health care team. This is called palliative or supportive care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

Common side effects from each treatment option for craniopharyngioma are described in detail within the Treatment Options section. Learn more about the most common side effects of a tumor and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the length and dosage of treatment(s) and your child’s overall health.

Before treatment begins, talk with your child’s doctor about possible side effects of each type of treatment your child will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. And, ask about the level of caregiving your child may need during treatment and recovery, as family members and friends often play an important role in the care of a child with craniopharyngioma. Learn more about caregiving.

In addition to physical side effects, there may be emotional and social effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies, including concerns about managing the cost of your medical care

During and after treatment, be sure to tell the health care team about the side effects your child experiences, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the After Treatment section or talking with your child’s doctor.

The next section helps explain medical tests and check-ups needed after finishing treatment for craniopharyngioma. Use the menu on the side of your screen to select After Treatment, or you can select another section, to continue reading this guide.

Craniopharyngioma - Childhood - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will read about your child’s medical care after treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

After treatment for craniopharyngioma ends, talk with your child’s doctor about the follow-up care plan. This plan should include regular physical examinations and/or MRI scans to monitor your child’s recovery for the coming months and years. All children treated for craniopharyngioma should have life-long follow-up care.

Follow-up care is important to find out whether the tumor has returned or is starting to grow again. It is also important to monitor the person’s visual, endocrine (hormone), and metabolic functions. As a result of the tumor and its treatment, hormone replacement therapy (see Treatment Options) is almost always necessary. There are often problems with slow metabolism and weight gain, so a regular exercise program and dietary changes are often recommended.

A child treated for craniopharyngioma should have regular MRI scans to check for any growth or recurrence of the tumor. Because craniopharyngioma is slow-growing, MRI scans are often only needed once or twice a year. If your child received radiation therapy, there is a small possibility that a different type of brain tumor may develop years later.

Based on the type of treatment your child received, the doctor will determine what examinations and tests are needed to check for long-term side effects and the possibility of secondary tumors. Your child’s doctor can recommend the necessary screening tests. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns. Learn more about survivorship.

The child’s family is encouraged to organize and keep a record of the child’s medical information. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. The doctor’s office can help you create this. This information will be valuable to doctors who care for your child during his or her lifetime. ASCO offers treatment summary forms to help keep track of the treatment your child received and develop a survivorship care plan once treatment is completed.

Children who have had a tumor can also enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating a balanced diet, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs.  Learn more about the next steps to take in survivorship.

The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select another section, to continue reading this guide.

Craniopharyngioma - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find some questions to ask your child’s doctor or other members of the health care team, to help you better understand the diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your child’s next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your child’s care.

  • What type of tumor does my child have?
  • Are other tests or surgery needed to confirm this diagnosis?
  • Can you explain my child’s pathology report (laboratory test results) to me?
  • What is your familiarity with craniopharyngioma and its treatment?
  • How many CNS tumors do you treat each year?
  • Do you attend meetings to discuss complicated tumor cases and possible new treatments for these tumors? What types of specialists attend such meetings?
  • Will an experienced neuropathologist review my child’s pathology slides?
  • What are the treatment options?
  • What clinical trials are open to my child? Where are they located, and how do I find out more about them?
  • Who will be part of my child’s health care team, and what does each member do?
  • Who will be coordinating my child’s overall treatment and follow-up care?
  • What treatment plan do you recommend? Why?
  • What is the goal of each treatment? Is it to eliminate the tumor, help my child feel better, or both?
  • Should I get a second opinion on this treatment plan?
  • Are there pediatric treatment centers that you recommend?
  • What are the chances for success with the planned treatment?
  • Does your practice include multidisciplinary care?
  • What are the possible side effects of this treatment, both in the short term and the long term?
  • Could the treatment affect my child’s vision?
  • How will this treatment affect my child’s daily life? Will he or she be able to go to school and perform his or her usual activities?
  • If I’m worried about managing the costs related to my child’s medical care, who can help me with these concerns?
  • Could this treatment affect my child’s fertility (ability to have a child in the future)?
  • Do you work with a social worker that assists patients with CNS tumors?
  • Do you know of a local support group for patients with CNS tumors?
  • Do you have reading material that would help me understand my child’s disease?
  • Who answers questions when you are unavailable?
  • What follow-up tests will my child need, and how often will he or she need them?
  • Is my child at risk for being overweight due to the tumor or its treatment? If so, how can we reduce his/her risk?
  • What support services are available to my child? To my family?
  • Whom should I call for questions or problems?

The next section offers some more resources that may be helpful to you and your family. Use the menu on the side of your screen to select Additional Resources, or you can select another section, to continue reading this guide.

Craniopharyngioma - Childhood - Additional Information Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about medical care and treatment. This is the final page of Cancer.Net’s Guide to Childhood Craniopharyngioma. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of being diagnosed with a tumor, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond. Here are a few sections that may get you started in exploring the rest of Cancer.Net:

- Search for a specialist in your local area using this free database of doctors from the American Society of Clinical Oncology.

- Review dictionary articles to help understand medical phrases and terms used in medical care and treatment.

- Read more about the first steps to take when newly diagnosed with a tumor.

Find out more about clinical trials as a treatment option.

- Learn more about coping with the emotions that a tumor can bring, including those within a family or a relationship.

- Find a national, not-for-profit advocacy organization that may offer additional information, services, and support for people with this type of tumor.

- Explore next steps a person can take after active treatment is complete.

This is the end of the Cancer.Net’s Guide to Childhood Craniopharyngioma. Use the menu on the side of your screen to select another section, to continue reading this guide.