Craniopharyngioma - Childhood

A risk factor is anything that increases a person’s chan c e of developing a tumor. The cause of a craniopharyngioma is not known, and there are no proven risk factors.

The next section in this guide is Symptoms and Signs . It explains what changes or medical problems craniopharyngioma can cause. Use the menu to choose a different section to read in this guide.

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.

How craniopharyngioma is diagnosed

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

There are different tests used for diagnosing craniopharyngioma. Not all tests described here will be used for every child.

• Physical examination . The doctor will examine your child’s head and body and ask questions about the symptoms they are experiencing and their 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 a water deprivation test to evaluate the production of a hormone that helps concentrate urine.

• Biopsy. A biopsy is the only way to make a definite diagnosis, even if other tests can suggest that a tumor is present. During biopsy, part or all of the tumor is removed for examination under a microscope. 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 central nervous system (CNS) surgery. Then, a pathologist examines the tissue removed during the surgery 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 T reatment ).

Imaging tests

Results of the physical examination and blood and/or urine 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 injected into a patient’s vein during the scan to provide better detail.

• Magnetic resonance imaging (MRI). An MRI produces detailed images of the inside of the body using magnetic fields, not x-rays. An MRI can be used to measure the tumor’s size. Often, a special dye called a contrast medium is injected into a patient’s vein before the scan to create a clearer picture.

After diagnostic tests are done, your child’s doctor will review 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.

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.

How craniopharyngioma is treated

In many cases, a team of doctors provides care to a child and their 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 therapists, occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available. Learn more about the types of clinicians who provide this type of care.

Treatment for craniopharyngioma is very often successful. 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 given to this area of the body 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. The doctors will consider several factors before recommending a treatment plan for your child.

There are treatments being studied in clinical trials for patients in whom the tumor cannot be completely removed surgically 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 conversations 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 .

The common types of treatments used for craniopharyngioma are described below. Your child’s care plan may also include treatment for symptoms and side effects, an important part of care for a brain tumor. Learn more about preparing your child for treatment.

READ MORE BELOW:

• Surgery

• Radiation therapy

• Physical, emotional, social, and financial effects of craniopharyngioma

• Remission and the chance of recurrence

• If treatment does not work

Surgery

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

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

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 called inoperable, and the doctor will recommend treating the tumor 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 sometimes have fewer long-term 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 .

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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. Most 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 child's doctor about the possible short- and long-term effects of your child’s treatment plan.

Learn more about the basics of radiation therapy .

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Physical, emotional, social, and financial effects of craniopharyngioma

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 and 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 and supportive 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 extent of the brain tumor, may receive this type of care. And it often works best when it is started right after diagnosis. People who receive palliative and supportive care along with treatment for the tumor often have less severe symptoms, better quality of life, and report that 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, such as surgery or radiation therapy, to improve symptoms.

Before treatment begins, talk with your child’s doctor about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative and supportive care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

Medical care is often expensive, and navigating health insurance can be difficult. Ask your doctor or another member of your health care team about talking with a financial navigator or counselor who may be able to help with your financial concerns .

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 and supportive care in a separate section of this website.

Increased hunger and obesity

Increased hunger, increased food intake, and obesity are common side effects of craniopharyngioma. The cause of increased and uncontrolled appetite for food among children with craniopharyngioma is not very well understood. However, it is believed to be related to damage to the nearby hypothalamus by the tumor or from surgery or radiation therapy. For many children with craniopharyngioma, obesity is the most severe long-term side effect of their tumor. Children with craniopharyngioma and their parents should be aware of this risk and pay special attention to eating healthy foods and getting regular exercise . It may be helpful to talk with an oncology registered dietitian and/or other health care team members.

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Remission and the chance of recurrence

After treatment, when the tumor can no longer be seen on a magnetic resonance imaging (MRI) scan, this is called having “no evidence of disease” or NED. It may also be called a remission. A remission may be temporary or permanent. This 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. This is also called a recurrence. 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 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 child's doctor about whether this might be an option for your child. Whichever treatment plan you choose, palliative and supportive care will be important for relieving symptoms and side effects.

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

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If treatment does not work

Although treatment is successful for the 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 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 and more comfortable 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 .

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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 children with a brain tumor. Use the menu to choose a different section to read in this guide.

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, current research focuses on treatments for recurrent tumors or when tumors 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 (also known as 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 is a type of immunotherapy that 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 tissue.

• 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 people 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 as effective as existing radiation therapy methods but may have fewer side effects.

• Molecular profiling and subtyping of craniopharyngioma. Recent studies have identified 2 subtypes of craniopharyngiomas: adamantinomatous craniopharyngioma (ACP) and papillary craniopharyngioma (PCP). ACPs are typically diagnosed in children and teens 5 to 15 years old and in people 45 to 60 years old, whereas PCPs are diagnosed mainly in adults in their 50s and 60s. ACPs are most commonly cystic in appearance and are driven by mutations in the CTNNB1 gene (encoding β-catenin) that are involved in regulation and coordination of cell–cell adhesion and gene transcription. PCPs are typically solid tumors and frequently have BRAF V600E mutations. Research is currently underway to better understand the biology of these subtypes, which may lead to the development of molecular-based targeted therapy for craniopharyngiomas.

• Palliative and 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 more effective ways to treat obesity, which is a common long-term side effect for survivors of childhood craniopharyngioma. Learn more in this guide's Follow-Up Care section.

Looking for More About the Latest Research?

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

• To find clinical trials specific to your child's diagnosis, talk with your child’s doctor or search online clinical trial databases .

• Listen to a podcast with an expert about research about craniopharyngioma announced at the 2021 ASCO Annual Meeting.

• Get updates from Cancer.Net delivered right to your inbox. Subscribe to the Inside Cancer.Net email newsletter.

• Visit the website of Conquer Cancer, the ASCO Foundation , to find out how to help support cancer research. Please note that this link takes you to a different ASCO website.

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

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, called a recurrence, or is starting to grow again.

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.

Rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, occupational 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 as possible. Learn more about rehabilitation.

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 first diagnosed and the types of treatment given.

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

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 after treatment has ended. 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 emotional 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 increased appetite, 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 registered dietitian nutritionist (RD or RDN) 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. Talk with your health care team to learn more about these resources.

Hormone replacement

A common presenting symptom and long-term side effect of children with craniopharyngiomas is diabetes insipidus. Diabetes insipidus is a result of a lack of production of a hormone called vasopressin by the pituitary gland, which is responsible for concentrating urine by the kidneys. Diabetes insipidus is treated with a hormone called desmopressin (DDAVP). Sometimes, other hormones produced by the pituitary gland are affected, too.

Hormone replacement is the use of medication to replace hormones that the body cannot produce enough of on its own. It is a type of hormone therapy . Hormone replacement 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 your child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, they have a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. The American Society of Clinical Oncology (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 pediatrician, primary care doctor, or another health care professional. This decision depends on several factors, including the type of tumor, treatments received, 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 their 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 them 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 their 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.

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 children with central nervous system (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 types of research are being done for craniopharyngioma in clinical trials? Do clinical trials offer additional treatment options for my child?

• 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? If so, how?

• How will this treatment affect my child’s daily life? Will they be able to go to school and perform their 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? Can you refer us to a registered dietitian?

• 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 my child 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 or late effects of having this surgery?

• What can be done to prevent or relieve the side effects?

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 or late effects of having this treatment?

• What can be done to prevent or relieve the side effects?

Questions to ask about planning follow-up care

• What is the chance that the tumor will come back? Should we 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 those tests be needed?

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

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

• When should my child return to their primary care doctor for regular medical care?

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

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