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Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Introduction

Approved by the Cancer.Net Editorial Board, 04/2020

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 Desmoplastic Infantile Ganglioglioma (DIG). Use the menu to see other pages. Think of that menu as a roadmap for this complete guide.

Desmoplastic infantile ganglioglioma, or DIG, is a rare type of brain tumor that can occur during childhood. A tumor begins when healthy cells change and grow out of control, forming a mass. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread.

DIG is a type of glioma, a tumor that starts in the glial cells, which are supportive cells in the brain. It usually occurs on one side of the brain and it can be very large. It is most commonly found in children younger than 18 months. Many times, DIG may have started very early in childhood or even before a child was born.

DIG is generally classified as a low-grade, slow-growing tumor that is usually noncancerous. However, in some instances, the tumor grows more quickly and is more likely to spread to other parts of the brain or body; this is called a high-grade tumor (see Stages and Grades).

This section covers DIG diagnosed in children. Learn more about brain tumors in adults.

Looking for More of an Introduction?

If you would like more of an introduction, explore this related item. Please note that this link will take you to another section on Cancer.Net:

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert in childhood cancer that provides basic information and areas of research.

The next section in this guide is StatisticsIt explains that DIG is rare. Use the menu to choose a different section to read in this guide.

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Statistics

Approved by the Cancer.Net Editorial Board, 01/2021

ON THIS PAGE: You will find information about when desmoplastic infantile ganglioglioma (DIG) is diagnosed. You will also read general information on surviving the disease. Use the menu to see other pages.

Brain and spinal cord tumors are the second most common type of childhood cancer, after leukemia. However, DIG is a rare type of childhood brain tumor that is found mainly in children younger than 18 months.

Children with DIG have an excellent chance of recovery when the tumor is completely removed through surgery (see Types of Treatment).

Information adapted from the websites of the American Cancer Society and the National Institute of Health's Genetic and Rare Diseases Information Center (sources accessed January 2021).

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 DIG. Use the menu to choose a different section to read in this guide.

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 04/2020

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.

Children with DIG may experience the following symptoms or signs. Sometimes, a child with DIG does not have any of these changes. Or, the cause of a symptom may be a different medical condition that is not a brain tumor.

  • Seizures or convulsions, which are sudden, involuntary movements of a person’s muscles

  • Rapid skull growth or an increase in head size during infancy

  • Tense and bulging fontanelle, which is the infant’s “soft spot” on the head

  • Abnormal or decreased sensations

  • Numbness

  • Weakness

  • Loss of muscle control

  • Increased or decreased muscle tone

  • Paralysis, which is being unable to move part or all of the body

If you are concerned about any changes your child experiences, please talk with your child’s doctor. The doctor will ask how long and how often your child has been experiencing the symptoms(s), in addition to other questions. This is to help figure out the cause of the problem, called a diagnosis.

If DIG is diagnosed, relieving symptoms remains an important part of 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 DiagnosisIt 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.

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Diagnosis

Approved by the Cancer.Net Editorial Board, 04/2020

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 brain tumor. 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.

This section describes options for diagnosing DIG. Not all tests listed below will be used for every child. 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 DIG:

  • 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 is usually injected into a patient’s vein.

  • 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 special dye called a contrast medium is given before the scan to create a clearer picture. This dye is usually injected into a patient’s vein.

  • Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. A pathologist then analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

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

The next section in this guide is Stages and GradesIt explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Stages and Grades

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will learn about how doctors describe the growth and spread of DIG. This is called the grade. Use the menu to see other pages.

Stage and grade describe where a tumor is located, if it is likely to spread, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to find this information, so the diagnosis may not be complete until all of the tests are finished. Knowing this information helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. 

Usually, there are different stage descriptions for different types of tumors. However, there is no standard staging system for DIG. Instead, DIG is usually described by grade (see below).

Grade

The grade describes how much the tumor cells look like healthy cells when viewed under a microscope. The doctor compares the tumor tissue with healthy tissue. Healthy tissue usually contains many different types of cells grouped together. The tumor’s grade may help the doctor predict how quickly it will grow and spread. In general, the lower the tumor’s grade, the better the prognosis.

If the tumor looks similar to healthy tissue and has different cell groupings, it is called "differentiated" or a "low-grade tumor." 

If the tumor looks very different from healthy tissue, it is called "poorly differentiated" or a "high-grade tumor." 

In its classification system for central nervous system tumors, the World Health Organization (WHO) classifies DIG as a grade I tumor. This grade I tumor classification group includes distinct, unconnected tumors that are less likely to spread. In addition, a grade I tumor classification means it can often be successfully treated with surgery to remove the tumor. (Surgery and other treatment types are discussed more in the next section.)

Recurrent DIG

A recurrent tumor is a tumor that has come back after treatment. If the tumor does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Information about the tumor will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Types of Treatment

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will learn about the different types of treatments doctors use for children with DIG. 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 with cancer 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. 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 brain 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 cancer is called a pediatric oncologist. If a pediatric cancer 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 works with a child and the family to provide care. This is called a multidisciplinary teamPediatric 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.

Descriptions of the common types of treatments used for DIG are listed below. Your child’s care plan also includes treatment for symptoms and side effects, an important part of care for DIG.

Treatment options and recommendations depend on several factors, including the type and grade of the tumor, possible side effects, the family’s preferences, and your 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 your child can expect while receiving 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 DIG because there are different treatment options. Learn more about making treatment decisions.

Surgery

Surgery is the most common treatment for a child with DIG. Often, it is the only treatment needed. Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. A neurosurgeon is a doctor who specializes in removing a tumor in the brain or spine with surgery.

Surgery to the brain requires the removal of part of the skull, a procedure called a craniotomy. After the surgeon removes the tumor, the patient’s own bone will be used to cover the opening in the skull. There have been rapid advances in surgery for brain tumors. The use of cortical mapping allows doctors to identify certain areas of the brain that control the senses, language, and motor skills through electrical stimulation. Better imaging tests also give surgeons more tools to plan and perform  surgery.

After surgery, the doctor will decide if additional treatment is needed based on the following criteria:

  • The amount of tumor removed

  • Your child’s age

  • Whether the disease has spread

Sometimes, surgery is not possible because the tumor cannot be reached or is near a vital structure. Tumors that cannot be removed with surgery are called inoperable. In these situations, the doctor will recommend treating the tumor in another way, such as chemotherapy (see below).

Side effects from surgery for DIG can vary. Before surgery, talk with your child’s health care team about the possible side effects from the specific surgery your child will have and how they can be relieved or managed. Learn more about the basics of surgery.

Chemotherapy

Chemotherapy is the use of drugs to destroy tumor cells, usually by keeping those cells from growing, dividing, and making more cells. Chemotherapy is rarely used for children with DIG. Chemotherapy may sometimes be used to slow or stop the growth of DIG when surgery is not an option. It also may be given before surgery to shrink the tumor or to destroy any tumor remaining after surgery.

If it is prescribed, chemotherapy is given by a pediatric oncologist or a medical oncologist, a doctor who specializes in treating a tumor with medication. Systemic chemotherapy gets into the bloodstream to reach tumor cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally). A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or a combination of different drugs given at the same time.

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.

Learn more about the basics of chemotherapyThe medications used to treat this type of tumor 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. Learn more about your child’s prescriptions by using searchable drug databases.

Physical, emotional, and social effects of a brain tumor

A brain 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.

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 a tumor, may receive this type of care. And it often works best when it is started right after the 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.

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 DIG, such as surgery or chemotherapy.

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.

Remission and the chance of recurrence

A remission is when the tumor 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 the doctor about the possibility of the tumor returning. Understanding your child's risk of recurrence and the treatment options may help people 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. DIG most often comes back in the same place as the original tumor, which is called a local recurrence.

When this occurs, a new cycle of testing will begin again to learn as much as possible about the recurrence. 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 and chemotherapy, 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 this type of recurrent tumor. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

If your child is diagnosed with a recurrence, you and your family may 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 your family cope. Learn more about dealing with a recurrence.

If treatment does not work

Although treatment is successful for many children with DIG, sometimes it is not. If a child’s tumor cannot be cured or controlled, this is called advanced or terminal disease. This diagnosis is stressful, and advanced DIG 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 medical 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 TrialsIt 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.

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - About Clinical Trials

Approved by the Cancer.Net Editorial Board, 04/2020

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 DIG. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. 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 and stages of DIG. 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 the 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. For some people, a clinical trial is the best treatment option available. 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 DIG. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with DIG.

Insurance coverage and the costs of clinical trials differs 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 your 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 cancer 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 than 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 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 DIG, 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, this website offers free access to a video-based educational program about clinical trials, located outside of this guide.

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

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Latest Research

Approved by the Cancer.Net Editorial Board, 04/2020

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

Doctors are working to learn more about DIG, ways to prevent it, how to best treat it, and how to provide the best care to children diagnosed with this disease. 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.

Because DIG is quite rare, DIG-specific clinical trials may be hard to find. However, patients and doctors are encouraged to review clinical trials focusing on childhood brain tumors, which sometimes include patients with several different types of tumors.

  • Molecular biology of the tumor. For DIG that cannot be effectively treated with surgery, it may be appropriate to perform a test called genetic sequencing on the tumor to identify pathways that can potentially be targeted with specific drugs. Learn more about targeted therapy

  • New treatments and imaging tests. Researchers are looking at new medications, different treatment combinations, and improved imaging techniques to treat childhood brain tumors.

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

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding DIG, explore these related items.

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

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Coping with Treatment

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of a brain tumor and its treatment. This page includes several links outside of this guide to other sections of this website. Use the menu to see other pages.

Every treatment for a brain tumor can cause side effects or changes to your child’s body and how they feel. For many reasons, people do not experience the same side effects even when given the same treatment for the same type of tumor. This can make it hard to predict how your child will feel during treatment.

As your family prepares to start treatment, it is normal to fear treatment-related side effectsIt 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 their age or the stage of disease.

Coping with physical side effects

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

Changes to your child’s physical health depend on several factors, including the tumor’s stage, 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 effectsTreating long-term side effects and late effects is an important part of your child's 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 family can have emotional and social effects after a diagnosis of DIG. 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 the 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 family’s needs.

Coping with the costs of medical care

Treatment for DIG can be expensive. It is often a big source of stress and anxiety for families dealing with the diagnosis. 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 DIG

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

When your child has DIG, 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, social, and financial 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.

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 your child's 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.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depressionconstipationdiarrhea, and rash that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your child's health care team.

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

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Follow-Up Care

Approved by the Cancer.Net Editorial Board, 04/2020

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 DIG 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 DIG, 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. After-treatment care recommendations are specific to each child.

The following factors can affect your child’s recovery from DIG:

  • Where the tumor was located

  • Whether the tumor could be removed by surgery

  • The need for and type of treatment after surgery

  • Your child’s age during treatment

Medical 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. 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. 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. Follow-up MRI scans after surgery are often recommended to watch for signs of tumor recurrence or growth. However, 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 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.

Managing long-term and late side effects of DIG

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 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 what examinations and tests are needed to check for late effects. 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 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. 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 their future health. 

If a doctor who was not directly involved in your child’s care 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 SurvivorshipIt describes how to cope with challenges in everyday life after a diagnosis of DIG. Use the menu to choose a different section to read in this guide.

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Survivorship

Approved by the Cancer.Net Editorial Board, 04/2020

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 the diagnosis of a tumor. In some ways, survivorship is one of the most complex aspects of the experience because it is different for every child and their family. 

After active treatment for DIG 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

  • 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 a brain 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 DIG, 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 cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving.

Healthy living after DIG

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

Children who have had DIG 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. 

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 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 and 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.

  • 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 health care team. Use the menu to choose a different section to read in this guide.

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 04/2020

Questions to Ask the Health Care Team

ON THIS PAGE: You will find some questions to ask the doctor or other members of the health 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 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 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. Cancer.Net Mobile app question tracker

Questions to ask after getting a diagnosis

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

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

Questions to ask about choosing a treatment and managing side effects

  • How familiar are you with my child's tumor type and its treatment?

  • What treatment options are available?

  • 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?

  • What is the chance for success with each treatment option?

  • 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, both in the short term and the long term?

  • 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 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 effects of having this surgery?

  • Will my child need additional treatment after surgery?

Questions to ask about having chemotherapy

  • 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 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 my child 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?

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

The next section in this guide is Additional ResourcesIt 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.

Desmoplastic Infantile Ganglioglioma, Childhood Tumor - Additional Resources

Approved by the Cancer.Net Editorial Board, 04/2020

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 Desmoplastic Infantile Ganglioglioma. Use the menu to go back and see other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of a brain 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 Cancer.Net’s Guide to Childhood Desmoplastic Infantile Ganglioglioma. Use the menu to choose a different section to read in this guide.