Astrocytoma - Childhood

ON THIS PAGE: You will find information about the estimated number of children and teens who will be diagnosed with astrocytoma each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with a tumor are the same. Use the menu to see other pages.

Every person is different, with different factors influencing their risk of being diagnosed with this tumor and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for your child individually. The original sources for these statistics are provided at the bottom of this page.

How many children and teens are diagnosed with astrocytoma?

Astrocytoma accounts for about half of all brain tumors in children. In 2023, an estimated 1,118 children and teens age 0 to 19 in the United States will be diagnosed with astrocytoma. Pilocytic astrocytomas make up an estimated 15% of all brain and other central nervous system (CNS) tumors in this age group.

What is the survival rate for astrocytoma?

There are different types of statistics that can help doctors evaluate a child or teen’s chance of recovery from astrocytoma. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having a tumor may affect life expectancy. Relative survival rate looks at how likely people with astrocytoma are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this tumor.

Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.

It is important to remember that statistics on the survival rates for children and teens with astrocytoma are only an estimate. They cannot tell an individual person if the tumor will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.

For children younger than 15, the 5-year relative survival rate for pilocytic astrocytoma is 97%. For those with diffuse astrocytoma, the 5-year relative survival rate is 82%. The 5-year relative survival rate for anaplastic astrocytoma is 25%.

The survival rates for astrocytoma vary based on several factors. These include the stage of tumor, a person’s age and general health, and how well the treatment plan works. Other factors that can affect outcomes include the grade of the astrocytoma and how much of the tumor can be removed during surgery. Children and teens with a type of astrocytoma that is unlikely to spread, called noninfiltrating astrocytoma, generally have a higher 5-year relative survival rate.

Experts measure relative survival rate statistics for astrocytoma every 5 years. This means the estimate may not reflect the results of advancements in how astrocytoma is diagnosed or treated from the last 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 2015–2019, published October 2022, and the Children’s Oncology Group CureSearch for Children’s Cancer website. (All sources accessed February 2023.)

The next section in this guide is Medical Illustrations . It offers drawings of body parts often affected by astrocytoma. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will find out more about the factors that increase the chance of developing astrocytoma. Use the menu to see other pages.

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.

Doctors and researchers do not know what causes most childhood tumors. There is some evidence that genetics may play a role in a small percentage of children with cerebral astrocytoma. The following factors may increase a child’s risk of developing astrocytoma:

• Neurofibromatosis. Neurofibromatosis is an inherited disorder that causes a type of noncancerous tumor called a neurofibroma. Neurofibromatosis is also called Recklinghausen’s disease or von Recklinghausen’s disease. Learn more about neurofibromatosis type 1 and neurofibromatosis type 2 .

• Other genetic conditions. Less commonly, the following genetic conditions are associated with a higher risk of developing a central nervous system (CNS) tumor:

  • Li-Fraumeni syndrome

  • Tuberous sclerosis complex

  • Nevoid basal cell carcinoma syndrome

  • Turcot syndrome

  • Constitutional mismatch repair deficiency syndrome (CMMRDS)

The next section in this guide is Symptoms and Signs . It explains what changes or medical problems astrocytoma 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, astrocytoma. They also do tests to learn if the tumor has spread to another part of the body from where it started. If the tumor has spread, it is called metastasis. Doctors may also do tests to learn which treatments could work best.

For most tumor types, 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 astrocytoma is diagnosed

There are many tests used for diagnosing astrocytoma. Not all tests described here will be used for every person. 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

In addition to a physical examination, the following tests may be used to diagnose astrocytoma:

• Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill to swallow.

• Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can be used to measure the tumor’s size. A contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow.

• Biopsy. Other tests can suggest that a tumor is present, but only a biopsy can make a definite diagnosis. For astrocytoma, a biopsy is done to determine the type and grade of the tumor. It can also be used to identify certain molecular features that help the doctor plan treatment (see below). During a biopsy, a doctor called a neurosurgeon will remove a small piece of tissue from the tumor. A neurosurgeon specializes in treating a central nervous system (CNS) tumor using surgery. A pathologist then analyzes the sample. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

• Biomarker testing of the tumor. Your child's doctor may recommend running laboratory tests on a tumor sample to identify specific genes, proteins, and other factors unique to the tumor. This may also be called molecular testing of the tumor. Results of these tests can help determine your child’s treatment options (see Types of Treatment ).

After diagnostic tests are done, your child’s doctor will review the results with you. If the diagnosis is astrocytoma, these results also help the doctor describe the tumor. This is called staging and grading.

The next section in this guide is Stages and Grades . It explains the system doctors use to describe the extent of astrocytoma. 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 astrocytoma. Use the menu to see other pages.

In general, tumors in children are uncommon. This means it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That is why more than 60% of children are treated as part of a clinical trial. A clinical trial is a research study that tests a new approach to treatment. The “standard of care” is the best treatments known based on previous clinical trials. Clinical trials may test such approaches as a new drug, a new combination of existing treatments, or new doses of current therapies. The health and safety of all children participating in clinical trials are closely monitored.

To take advantage of these newer treatments, children with a central nervous system (CNS) tumor should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children and have access to the latest research. A doctor who specializes in treating children with a tumor is called a pediatric oncologist. For astrocytoma, a neuro-oncologist may also be involved with treatment. This is a doctor who specializes in CNS tumors. If a pediatric cancer center is not nearby, general cancer centers sometimes have pediatric and neurology specialists who are able to be part of your child’s care.

How astrocytoma is treated

In many cases, a team of doctors works with a child and their family to provide care. This is called a multidisciplinary team . Pediatric cancer centers often have extra support services for children and their families, such as child life 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 options and recommendations depend on several factors, including the type and grade of the tumor, possible side effects, the family’s preferences, and the child’s overall health. 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 you can expect during the treatment. These types of talks are called "shared decision-making." Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your child's care. Shared decision-making is particularly important for astrocytoma because there are different treatment options. Learn more about making treatment decisions .

The common types of treatments used for astrocytoma are described below, including treatments called targeted therapy and immunotherapy that may be available through clinical trials. Your child’s care plan also includes treatment for symptoms and side effects, an important part of your child's medical care.

• Surgery

• Radiation therapy

• Chemotherapy

• Targeted therapy

• Immunotherapy

• Physical, emotional, and social effects of a CNS tumor

• Remission and the chance of recurrence

• If treatment does not work

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. It is the most common treatment for astrocytoma. During surgery, a neurosurgeon removes as much of the tumor as possible.

Sometimes, a tumor is inoperable, meaning it cannot be reached by surgery because of its location. However, even for inoperable tumors, a surgical biopsy can usually still be done to find out the type and grade of the tumor (see Diagnosis ).

If a low-grade tumor cannot be completely removed, the doctor usually watches for signs of tumor growth before recommending other types of treatment. If a tumor causes symptoms and cannot be completely removed with surgery, radiation therapy or chemotherapy is often used (see "Radiation therapy" and "Chemotherapy," below).

A child with a high-grade tumor often needs additional treatment regardless of whether the entire tumor was removed during surgery.

Before surgery, talk with your child’s health care team about the possible side effects from the recommended surgery and how side effects can be managed. 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. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.

Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most short-term side effects go away soon after treatment is finished.

Radiation therapy can sometimes cause problems with the long-term growth and development of a child’s brain. This means that the doctor may choose to treat the tumor in another way. To avoid or reduce the need for radiation therapy in young children, the doctor may first use chemotherapy (see below) to shrink the tumor.

Learn more about the basics of radiation therapy .

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Therapies using medication

The treatment plan may include medications to destroy tumor cells. Medication may be given through the bloodstream to reach tumor cells throughout the body. When a drug is given this way, it is called systemic therapy. Medication may also be given locally, which is when the medication is applied directly to the tumor or kept in a single part of the body.

This treatment is generally prescribed by a medical oncologist, a doctor who specializes in treating a tumor with medication.

Medications are often given through an intravenous (IV) tube placed into a vein using a needle or as a pill or capsule that is swallowed (orally). If you are given oral medications, be sure to ask your health care team about how to safely store and handle them.

The types of medications used for astrocytoma include:

• Chemotherapy

• Targeted therapy

• Immunotherapy

Each of these types of therapies is discussed below in more detail. A person may receive 1 type of medication at a time or a combination of medications given at the same time. They can also be given as part of a treatment plan that includes surgery and/or radiation therapy.

The medications used to treat astrocytoma are continually being evaluated. Talking with your child’s doctor is often the best way to learn about the medications prescribed for your child, their purpose, and their potential side effects or interactions with other medications.

It is also important to let your doctor know if your child is taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with anti-tumor medications, causing unwanted side effects or reduced effectiveness. Learn more about your child’s prescriptions by using searchable drug databases .

Chemotherapy

Chemotherapy is the use of drugs to destroy tumor cells, usually by keeping the tumor cells from growing, dividing, and making more cells.

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive a single drug at a time or combinations of different drugs given at the same time. Chemotherapy for astrocytoma often involves a combination of 2 or 3 drugs.

Chemotherapy may be used to delay or avoid using radiation therapy in young children with low-grade tumors, such as juvenile pilocytic astrocytoma (JPA), due to possible side effects. For a high-grade tumor, chemotherapy may work better when combined with surgery and radiation therapy.

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away after treatment is finished. Talk with your child's doctor about what to expect based on the specific medications prescribed.

Learn more about the basics of chemotherapy .

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Targeted therapy

Targeted therapy is a treatment that targets the tumor’s specific genes, proteins, or the tissue environment that contributes to the tumor’s growth and survival. This type of treatment blocks the growth and spread of tumor cells and limits damage to healthy cells.

Not all tumors have the same targets. To find the most effective treatment, your child’s doctor may run tests to identify the genes, proteins, and other factors in the tumor. This helps doctors better match each child with the most effective treatment whenever possible. In addition, research studies continue to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments .

Larotrectinib (Vitrakvi) is a type of targeted therapy that is not specific to a certain type of tumor but focuses on a specific genetic change called an NTRK fusion. This is also called a tumor-agnostic treatment . NTRK fusions are found in a range of tumors, including astrocytoma. Larotrectinib is approved as a treatment for astrocytoma that is metastatic or cannot be removed with surgery and has worsened despite other treatments.

Talk with your child’s doctor to learn more about targeted treatment options within a clinical trial . In addition, ask about possible side effects for a specific medication and how they can be managed.

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Immunotherapy

Immunotherapy uses the body's natural defenses to fight a tumor by improving your immune system’s ability to attack tumor cells.

Immunotherapy for astrocytoma is currently being researched in clinical trials . Talk with your child’s doctor to learn more about treatment options within a clinical trial.

Different types of immunotherapy can cause different side effects. Common side effects include skin reactions, flu-like symptoms, diarrhea, and weight changes. Talk with your child’s doctor about possible side effects for the immunotherapy recommended for your child. Learn more about the basics of immunotherapy .

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Physical, emotional, and social effects of a CNS tumor

A CNS tumor 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.

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 stage of the tumor, may receive this type of care. And it often works best when it is started right after a CNS tumor diagnosis. People who receive palliative 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.

Supportive care can vary widely and often includes 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 chemotherapy, surgery, or radiation therapy.

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 care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

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.

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Remission and the chance of recurrence

A remission is when tumor cells cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the tumor will come back. While many remissions are permanent, it is important to talk with your child's doctor about the possibility of the disease returning. Understanding your child’s risk of recurrence and the treatment options may help you feel more prepared if the tumor does return. Learn more about coping with the fear of recurrence .

If the tumor returns after the original treatment, it is called a recurrent tumor. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence). When astrocytoma recurs, it usually recurs near where the tumor originally started.

If a recurrence happens, a new cycle of testing will begin again to learn as much as possible about it. After this testing is done, you and your child’s doctor will talk about the treatment options. Often the treatment plan will include the treatments described above, such as surgery, radiation therapy, and therapies using medication, but they may be used in a different combination or given at a different pace. Your child’s doctor may suggest clinical trials that are studying new ways to treat recurrent astrocytoma. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

Treatment for recurrent astrocytoma depends on 3 factors:

• Grade of the tumor

• Where the tumor recurred

• The type of treatment your child received for the original tumor

If the tumor is a low-grade recurrent astrocytoma, the doctor may perform surgery to remove as much of the tumor as possible. Children who have not previously had radiation therapy or chemotherapy may receive either or both of these treatments for the recurrent tumor.

If the tumor is a high-grade recurrent astrocytoma, the doctor may suggest other types of chemotherapy or radiation therapy. Rarely, chemotherapy along with stem cell/bone marrow transplantation may be recommended.

A recurrent tumor may bring up emotions such as disbelief or fear. You and your family 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 many children with a CNS tumor, 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 an advanced tumor 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 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 .

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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 astrocytoma. 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 astrocytoma and how to treat it. Use the menu to see other pages.

Doctors are working to learn more about astrocytoma. This includes ways to prevent it and how to provide the best care to children diagnosed with astrocytoma. The following areas of research may include new options for patients through clinical trials. Always talk with your child’s doctor about the best diagnostic and treatment options for your child.

• Improved methods of imaging and surgery. Imaging techniques are being developed and improved that help surgeons better pinpoint the tumor’s location. These techniques can help reduce or prevent damage to the healthy parts of the central nervous system (CNS) during treatment.

  • Functional magnetic resonance imaging (fMRI) identifies the parts of the brain that control speech, hearing, vision, touch, and movement. The specific locations of these functions are slightly different in each person. Functional MRI allows surgeons to plan surgery around these areas.

  • Image-guided stereotaxis allows surgeons to visualize and operate on the brain using 3-dimensional outlines of the brain and the tumor. Along with specialized software, these images help guide the surgeon to the tumor. Tumors that were once considered inoperable can often be removed with this technique.

• Improved ways to give radiation therapy. Conformal radiation therapy is a way to deliver high doses of radiation directly to a tumor and not healthy tissue. This technique produces detailed 3-dimensional maps of the brain and tumor. These maps help doctors know exactly where to direct the radiation therapy.

• Targeted treatments based on the tumor's molecular features. As discussed in Types of Treatment , researchers are studying the use of targeted therapy to treat astrocytoma with certain genetic changes. Specifically, researchers are studying new drugs that target changes, called mutations or alterations, on the BRAF gene.

• Immunotherapy. As outlined in Types of Treatment , immunotherapy is an active area of research for astrocytoma. Researchers are studying how well these types of drugs work and how safe they are for children with both high-grade and low-grade astrocytoma.

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

Looking for More About the Latest Research?

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

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

• 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 astrocytoma 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 for astrocytoma is completed and why this follow-up care is important. Use the menu to see other pages.

Care for children diagnosed with astrocytoma 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 a tumor, including astrocytoma, should have life-long, follow-up care.

Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead. A child’s specific follow-up care plan depends on many factors, including the grade of tumor and its location, the child’s age, and the type of treatment given.

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 as possible. Learn more about this type of 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. The 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, stage, and grade of the 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 astrocytoma

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 type of tumor that happens in someone who has had a 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 examinations and tests to check for late effects.

• Surgery. The risks and possible side effects vary widely, depending on the location and features of the tumor.

• Chemotherapy. The risks and chance of secondary cancers are based on the specific drugs and doses.

• Radiation therapy. Radiation therapy to the head and spine may cause cognitive and endocrine (hormonal) symptoms over time. The seriousness of these side effects depends on the dose and your child’s age.

Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created long-term follow-up care recommendations 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 your 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 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, stage, and grade of the 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 their future health.

If a doctor who was not directly involved in your child’s care for astrocytoma 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 astrocytoma. 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 medical care team, to help you better understand your child’s diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with your child's 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 child’s 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

• Where exactly is the astrocytoma located?

• What is the grade of the tumor? What does this mean?

• What is your familiarity with my child’s tumor type and its treatment?

• Can you explain my child’s pathology report (laboratory test results) to me?

Questions to ask about choosing a treatment and managing side effects

• What treatment options are available?

• Are there other treatment options available at other cancer centers?

• What clinical trials are available for my child? Where are they located, and how do I find out more about them?

• 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?

• 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 are the possible side effects of this treatment?

• How will this treatment affect my child’s daily life? Will they be able to go to school and perform their usual activities?

• Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should I talk with a fertility specialist before treatment begins?

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

• 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 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 effects of surgery?

Questions to ask about radiation therapy

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• Will my child receive this treatment at a hospital or clinic?

• 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 chemotherapy, targeted therapy, and immunotherapy

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• Will my child receive this treatment at a hospital or clinic? Or will they take it at home?

• 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 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 those tests be needed?

• 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?

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