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Craniopharyngioma - Childhood - Introduction

Approved by the Cancer.Net Editorial Board, 01/2019

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. Use the menu to see other pages. Think of that menu as a roadmap for this complete guide.

Craniopharyngioma is a type of central nervous system (CNS) tumor. A CNS tumor may be either 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 is usually slower-growing but will not spread. Craniopharyngioma is considered a benign tumor, which means that it 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 5 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.

Craniopharyngioma usually occurs in a part of the brain called the suprasellar region. This region is the area of the brain just above the sella. The sella is 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. The optic nerves and a gland called the hypothalamus are located above the sella. The hypothalamus regulates hunger, body temperature, thirst, sleep, fatigue, and other behaviors.

About craniopharyngioma

Craniopharyngioma is a slow-growing tumor that may grow for many years before it is found. It may be solid and/or cystic. A cystic 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 computed tomography (CT) scan (see Diagnosis). 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 Introduction?

If you would like more of an introduction, explore these related items. Please note that these links will take you to other sections on Cancer.Net:

  • ASCO Answers Fact Sheet: Read a 1-page fact sheet that offers an introduction to CNS tumors in children. This free fact sheet is available as a PDF, so it is easy to print out.

  • 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.

The next section in this guide is Statistics. It helps explain the number of children who are diagnosed with craniopharyngioma and general survival rates. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - Statistics

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will find information about the number of children who are diagnosed with craniopharyngioma each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors. Use the menu to see other pages.

Craniopharyngioma accounts for approximately 6% of all brain tumors in children. It is diagnosed most often between the ages of 5 and 14, but it is possible for a person of any age to be diagnosed with craniopharyngioma. Approximately 150 people under the age of 15 will be diagnosed with the disease this year.

The 5-year survival rate tells you what percent of children live at least 5 years after the tumor is found. Percent means how many out of 100. The 5-year survival rate and 10-year survival rate for children with craniopharyngioma are higher than 90%.

It is important to remember that statistics on the survival rates for children with craniopharyngioma are an estimate. The estimate comes from annual data based on the number of children with this cancer in the United States. Also, experts measure the survival statistics every 5 years. So the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Talk with your child’s doctor if you have any questions about this information. Learn more about understanding statistics.

Statistics adapted from the Central Brain Tumor Registry of the United States Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2011–2015, and the National Cancer Institute (January 2019).

The next section in this guide is Risk Factors. It explains that there are currently no known factors linked with an increased chance of developing craniopharyngioma. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. Use the menu to see other pages.

Symptoms of craniopharyngioma can be caused by hormonal changes, 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. Children with craniopharyngioma may experience any of the symptoms or signs listed below.

General symptoms include:

  • Headaches, which may be severe and worse in the early morning

  • Nausea and/or vomiting

  • Difficulty with balance

  • Increased sleepiness or fatigue

  • Mood or behavior changes

Location-specific symptoms of craniopharyngioma include:

  • Obesity or excessive weight gain

  • Excessive thirst and increased urination

  • Vision changes, blurriness, or loss of peripheral vision

  • Slow or halted growth

  • Early or delayed puberty

If you are concerned about any changes your child experiences, 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 figure 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 be called palliative care or supportive care. It is often started soon after diagnosis and continued throughout treatment. Be sure to talk with the health care team about the symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - Diagnosis

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, a tumor. Doctors may also do tests to learn which treatments could work best.

For most tumors, a biopsy is the only sure way for the doctor to know if an area of the body has a tumor. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

Your child’s doctor may consider these factors when choosing a diagnostic test:

  • The type of tumor suspected

  • Your child’s signs and symptoms

  • Your child’s age and general health

  • The results of earlier medical tests

The tests listed below may be used to diagnose craniopharyngioma. This list describes options for diagnosing craniopharyngioma. Not all tests listed below will be used for every child.

  • 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 include tests to check your child’s vision, growth and development, and brain function.

  • Blood and/or urine tests. The doctor may recommend different blood tests, including tests that measure the levels of certain hormones. If your child has excessive thirst and increased urination, the doctor may recommend tests to check how well the kidneys are working.

  • Biopsy. A biopsy is the removal and examination of part or all of the tumor. For craniopharyngioma, a neurosurgeon may remove a piece of the tumor or the entire tumor during an operation. A neurosurgeon is a doctor who specializes in CNS surgery. Then, a pathologist examines the tissue removed under a microscope to make a diagnosis. 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. Usually, the neurosurgeon will try to safely remove as much of the tumor as possible while limiting damage to the brain (see Types of Treatment).

Imaging tests

Results of the physical examination and blood tests may suggest that imaging tests are needed to look for craniopharyngioma. Imaging tests show pictures of the inside of the body. There are 2 main types of imaging tests used to find craniopharyngioma.

  • Computed tomography (CT or CAT) scan. A CT scan takes pictures of the brain using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image 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. MRI can 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.

After diagnostic tests are done, your child’s doctor will review all of the results with you. This information will be used to recommend treatment options.

The next section in this guide is Stages. It explains that doctors do not commonly use stage to describe craniopharyngioma. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - Stages

Approved by the Cancer.Net Editorial Board, 01/2019

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

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 in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - Types of Treatment

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will learn about the different types of treatments doctors use for children with craniopharyngioma. Use the menu to see other pages.

To take advantage of the special expertise necessary to treat a brain tumor, children with a brain tumor should receive treatment 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 a tumor is called a pediatric oncologist. A doctor who specializes in treating children with a brain tumor is called a pediatric neuro-oncologist. If a pediatric treatment center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.

Treatment overview

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, dietitians, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Treatment for craniopharyngioma is very often successful. Descriptions of the common types of treatments used for craniopharyngioma are listed below. Your child’s care plan may also include treatment for symptoms and side effects, an important part of care for a brain tumor.

The treatment plan used depends on whether the tumor can be completely removed with 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 permanent learning and memory problems. Radiation therapy can also slow a child’s metabolism and decrease the levels of hormones needed for the body to function well.

There are treatments being studied in clinical trials for patients with a tumor that cannot be completely removed, but who would like to avoid or delay radiation therapy. A clinical trial is a research study that tests a new approach to treatment. Talk with the doctor about whether this might be an option for your child.

Take time to learn about all of your child’s treatment options and be sure to ask questions about things that are unclear. Talk with your child’s doctor about the goals of each treatment and what your child can expect during treatment. These types of talks are called “shared decision making.” Shared decision making is when you and the doctors work together to choose treatments that fit the goals of your child’s care. 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.

Possible 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 major blood vessels or the optic chiasm, which is an area of the brain that controls vision. This can make it difficult to remove the tumor. Some tumors cannot be removed using surgery because of their location and can only have a small portion removed during a biopsy (see Diagnosis). In this situation, the tumor is considered inoperable, and the doctor will recommend treating the tumor in another way.

The doctor may recommend additional treatment after surgery. Research studies have shown that people with craniopharyngioma that was partially removed who received radiation therapy live as long as those who had the tumor completely removed with surgery. In addition, they often have fewer side effects, such as obesity, hormone changes, stroke, severe bleeding, or damage to the hypothalamus.

Before surgery, talk with your child’s health care team about the possible side effects from the recommended surgery. Learn more about the basics of 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 affect the growth and development of a child’s brain, advanced treatment planning techniques should be used. These techniques can help lessen the amount of radiation given 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 so doctors know exactly where to deliver the radiation treatment. This type of radiation therapy 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 the basics of radiation therapy.

Physical, emotional, and social effects

Craniopharyngioma and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative care or supportive care. It is an important part of your child’s care that is included along with treatments intended to slow, stop, or eliminate the tumor.

Palliative care focuses on improving how your child feels during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of brain tumor, may receive this type of care. And it often works best when it is started right after diagnosis. People who receive palliative care along with treatment for the tumor 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, emotional and spiritual support, and other therapies. Your child may also receive palliative treatments similar to those meant to get rid of the tumor, such as surgery or radiation therapy.

Before treatment begins, talk with your child’s doctor about the goals of each treatment in the treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative care options.

During treatment, your child’s health care team may ask you to answer questions about your child’s symptoms and side effects and to describe each problem. Be sure to tell the health care team if your child is experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative care in a separate section of this website.

Chance of the tumor coming back or worsening

When the tumor cannot be seen on an MRI scan, this is called having “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 your child’s 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 returns or grows 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 (called a regional recurrence).

When this occurs, a new cycle of testing may be done to learn as much as possible about the recurrence. After this testing is done, your child’s doctor will talk about the treatment options. Often the treatment plan will include the treatments 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 children with recurrent or worsening craniopharyngioma. Talk with your doctor about whether this might be an option for your child. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

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

If treatment does not work

Although treatment is successful for most 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 advanced craniopharyngioma may be difficult to discuss. However, it is important to have open and honest conversations with your child’s health care team to express your family’s feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help.

Hospice care is designed to provide the best possible quality of life for people who are expected to live less than 6 months. Parents and guardians are encouraged to talk with the health care team about hospice options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Some children may be happier if they can 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 treatment 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 in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with a brain tumor. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - About Clinical Trials

Approved by the Cancer.Net Editorial Board, 01/2019

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. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with a brain tumor. To make scientific advances, doctors develop research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Clinical trials are used for all types of craniopharyngioma. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment.

Children who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their child’s health care team about the pros and cons of joining a specific study.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your child’s doctor about clinical trials for symptoms and side effects.

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. Because standard treatments are not perfect, people are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other people volunteer for clinical trials because they know that these studies are a way to contribute to the 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.

Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials in this way is rare overall and not done at all in childhood brain tumor research. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should:

  • Describe all of the treatment options, so that the person understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together.

People who participate in a clinical trial may stop participating at any time for personal or medical reasons. 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 people participating in a clinical trial talk with the doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if they choose to leave the clinical trial before it ends.

Finding a clinical trial

Research through clinical trials is ongoing for all types of tumors. For specific topics being studied for craniopharyngioma, learn more in the Latest Research section.

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.

PRE-ACT, Preparatory Education About Clinical Trials

In addition, you can find a free video-based educational program about cancer clinical trials in another section of this website.

The next section in this guide is Latest Research. It explains areas of scientific research for craniopharyngioma. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - Latest Research

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will read about the scientific research being done to learn more about craniopharyngioma and how to treat it. Use the menu to see other pages.

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 with surgery. There is also ongoing research to understand what allows craniopharyngioma to grow. Always talk with your child’s doctor about the best diagnostic and treatment options for your child.

  • Treatment of cysts. Sometimes, the tumor itself is not actively growing, but it has a cyst that is growing and causing symptoms. These cysts can be treated with surgery or by injections of other treatments. Such treatments include radioactive phosphorous P-32, interferon (Roferon-A, Infergen, Intron A, Alferon), and bleomycin (available as a generic drug).

  • Immunotherapy. Immunotherapy, also called biologic therapy, is designed to boost the body’s natural defenses to fight the tumor. It uses materials made either by the body or in a laboratory to improve, target, or restore immune function. Interferon helps regulate the body’s natural immune system. Interferon may help treat some childhood craniopharyngiomas. It is given either as a weekly injection under the skin or by injection directly into a cyst (see above).

  • 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 3-dimensional radiation techniques allows high doses of radiation therapy to be delivered to the tumor with lower doses to nearby healthy brain tissue. These methods may help reduce damage to healthy tissues.

  • Proton therapy. Proton therapy is a type of external-beam radiation therapy that uses protons rather than x-rays. At high energy, protons can destroy tumor cells. Doctors are studying proton therapy for patients with a tumor that cannot be completely removed with surgery. Proton therapy allows for high doses of radiation therapy to be delivered to the tumor while reducing radiation doses to the healthy brain tissue. Proton therapy is believed to be equally effective as existing radiation therapy methods but may have fewer side effects.

  • Palliative care/supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current craniopharyngioma treatments to improve comfort and quality of life for patients.

  • Managing long-term side effects. There are several ongoing studies to find effective ways to treat obesity, which is a common long-term side effect for survivors of childhood craniopharyngioma. Learn more in Follow-up Care.

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:

The next section in this guide is Coping with Treatment. It offers some guidance in how to cope with the physical, emotional, social, and financial changes that a CNS tumor and its treatment can bring. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - Coping with Treatment

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of craniopharyngioma and its treatment. Use the menu to see other pages.

Every treatment for craniopharyngioma can cause side effects or changes to your child’s body and how he or she feels. For many reasons, children do not experience the same side effects even when given the same treatment. This can make it hard to predict how your child will feel during treatment.

As your child prepares to start treatment, it is normal to fear treatment-related side effects. It may help to know that your child’s health care team will work to prevent and relieve side effects. Doctors call this part of treatment “palliative care” or "supportive care." It is an important part of your child’s treatment plan, regardless of his or her age or tumor size.

Coping with physical side effects

Common physical side effects from each treatment option for craniopharyngioma are described within the Types of Treatment section. Learn more about side effects of craniopharyngioma and its treatment, along with ways to prevent or control them. Changes to your child’s physical health depend on several factors, including the length and dose of treatment and your child’s general health.

It is important to discuss any new side effects or changes in existing side effects with your child’s health care team. Providing this information helps them find ways to treat or manage the side effects so your child feels more comfortable and can potentially keep any side effects from worsening.

You may find it helpful to keep track of your child’s side effects so you are prepared to discuss any changes with the health care team. Learn more about why tracking side effects is helpful.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.

Coping with emotional and social effects

Your child can have emotional and social effects as well as physical effects after a diagnosis of craniopharyngioma. This may include dealing with difficult emotions, such as anxiety or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about a diagnosis.

You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

Coping with financial effects

Treatment for craniopharyngioma can be expensive. It is often a big source of stress and anxiety for families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their child’s care. Families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.

Caring for a child with craniopharyngioma

Family members and friends often play an important role in taking care of a child with craniopharyngioma. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family can give you valuable support, even if they live far away.

When your child has craniopharyngioma, you may have an additional range of responsibilities. These may include giving medications or managing symptoms and side effects. However, it is important to seek help from others. Below are some of the responsibilities your family or friends could help with:

  • Providing short-term care for your child

  • Giving support and encouragement

  • Assisting with meals or household chores

  • Helping with insurance and billing issues

Learn more about caregiving.

Talking with your child's health care team about side effects

Before starting treatment, talk with your child’s doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your child’s health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, and social effects.

Also, ask how much care your child may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan. Create a caregiving plan with this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print out.

Looking for More on How to Track Side Effects?

Cancer.Net offers several resources to help you keep track of symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:

  • Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of symptoms and side effects.
  • ASCO Answers Managing Pain: Get this 36-page booklet about the importance of pain relief that includes a pain tracking sheet to record how pain affects your child. The free booklet is available as a PDF, so it is easy to print out.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on diarrhea and rash that provide a tracking sheet to record the timing and severity of the side effect. These free fact sheets are available as a PDF, so it is easy to print out.

The next section in this guide is Follow-up Care. It explains the importance of checkups after treatment is finished. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - Follow-Up Care

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will read about your child’s medical care after treatment is finished and why this follow-up care is important. Use the menu to see other pages.

Care for children diagnosed with craniopharyngioma does not end when active treatment has finished. Your child’s health care team will continue to check that the tumor has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for craniopharyngioma should have life-long, follow-up care.

Your child’s follow-up care may include regular physical examinations, MRI scans, or both. Doctors want to keep track of your child’s recovery in the months and years ahead. Follow-up care is important to find out whether the tumor has returned or is starting to grow again.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the tumor has come back. A tumor recurs because small areas of tumor cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your child's doctor will ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type of tumor originally diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress.

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.

Managing long-term and late side effects of a childhood brain tumor

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems and second cancers, which is a new cancer that happens in someone who has had another type of tumor before. They also include problems, such as anxiety and depression, and problems with memory, thinking, attention, and learning.

Based on the type of treatment your child received, the doctor will recommend the examinations and tests that are needed to check for late effects. For children with craniopharyngioma, it is important to monitor their weight, visual, endocrine (hormone), and metabolic functions. As a result of the tumor and its treatment, hormone replacement (see below) is often needed.

It is also important that your child's follow-up care addresses quality of life, including any developmental or emotional concerns.

Obesity

Children who received treatment for craniopharyngioma often have problems with a slow metabolism, weight gain, and obesity. A regular exercise program and dietary changes to the foods they eat are often recommended. Consider talking with a dietitian who has experience in helping survivors manage this side effect. There are also clinical trials to help find new ways to manage weight gain for survivors of craniopharyngioma.

Hormone replacement

Hormone replacement is the use of medication to replace hormones that 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, including 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.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult survivors that can be found on a separate website: www.survivorshipguidelines.org.

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of the child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help keep track of the treatment your child received and develop a survivorship care plan when treatment is completed.

Some children continue to see their oncologist, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including the type of tumor, side effects, health insurance rules, and your family’s personal preferences. Talk with the health care team about your child’s ongoing medical care and any concerns you have about his or her future health.

If a doctor who was not directly involved in your child’s care for craniopharyngioma will lead the follow-up care, be sure to share the treatment summary and survivorship care plan forms with him or her and with all future health care providers. Details about the specific treatment given are very valuable to the health care professionals who will care for your child throughout his or her lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a diagnosis of craniopharyngioma. Use the menu to choose a different section to read in this guide

Craniopharyngioma - Childhood - Survivorship

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s diagnosis. Use the menu to see other pages.

What is survivorship?

The word “survivorship” means different things to different people, but it often describes living with, through, and beyond being diagnosed with a tumor. In some ways, survivorship is one of the most complex aspects of the experience because it is different for every child and his or her family.

After active treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after the diagnosis. Other families stay very anxious about their child’s health and become uncertain about coping with everyday life.

One source of stress may occur when frequent visits to the health care team end after completing treatment. Often, relationships built with the health care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, educational issues, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • Understanding the challenge your family is facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action your family chooses.

It may be helpful to join an in-person support group or online community of childhood brain tumor survivors. Support groups also exist for parents of children diagnosed with this type of tumor. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of the health care team, individual counseling, or asking for assistance at the learning resource center of the place where your child received treatment.

Changing role of caregivers

Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with craniopharyngioma, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric treatment centers can help with this transition. You can also learn more about adjusting to life after caregiving.

Healthy living after craniopharyngioma

Survivorship often serves as a strong motivator to make lifestyle changes, often for the family as a whole.

Children who have had a tumor can 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 well, managing stress, 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 making healthy lifestyle choices.

It is important that your child has recommended medical checkups and tests (see Follow-up Care) to take care of his or her health. Rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with the doctor to develop a survivorship care plan that is best for your child’s needs.

Looking for More Survivorship Resources?

For more information about survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net offers a lot of information and resources to help survivors cope, including specific sections for children, teens, and young adults. There is also a main section on survivorship for people of all ages.

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that can help with the transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about childhood cancer survivorship.

The next section offers Questions to Ask the Health Care Team to help start conversations with your child’s medical care team. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 01/2019

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. Use the menu to see other pages.

Talking often with the health care team 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 a digital list and other interactive tools to manage your child’s care. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

  • What type of tumor does my child have? Can you describe what this means?

  • 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?

Questions to ask about choosing a treatment and managing side effects

  • What are the treatment options?

  • What clinical trials are available for 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 leading my child’s overall treatment?

  • 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? Can you explain how?

  • 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?

  • Is my child at risk for being overweight due to the tumor or its treatment? If so, how can we reduce this risk?

  • If I’m worried about managing the costs of medical care, who can help me?

  • Could this treatment affect my child’s fertility (ability to have a child in the future)?

  • Do you work with a social worker that helps children with CNS tumors and their families?

  • Do you know of a local support group for families with a child diagnosed with a CNS tumor?

  • Do you have reading material that would help me understand this disease?

  • What support services are available to my child? To my family?

  • If I have questions or problems, who should I call?

Questions to ask about having surgery

  • What type of surgery will my child have?

  • How long will the operation take?

  • How long will he or she be in the hospital?

  • Can you describe what recovery from surgery will be like?

  • Who should I contact about any side effects my child experiences? And how soon?

  • What are the possible long-term effects of having this surgery?

Questions to ask about having radiation therapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • What side effects can I expect during treatment?

  • Who should I contact about any side effects my child experiences? And how soon?

  • What are the possible long-term effects of having this treatment?

  • What can be done to relieve the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the tumor will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the treatment my child received?

  • What follow-up tests will my child need, and how often will he or she need them?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • Who will be leading my child’s follow-up care?

  • What survivorship support services are available to my child? To my family?

The next section in this guide is Additional Resources. It offers some more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.

Craniopharyngioma - Childhood - Additional Resources

Approved by the Cancer.Net Editorial Board, 01/2019

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. Use the menu to go back and see other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of being diagnosed with a tumor 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 links to help you explore other parts of Cancer.Net:

This is the end of the Cancer.Net’s Guide to Childhood Craniopharyngioma. Use the menu to choose a different section to read in this guide.