ON THIS PAGE: You will learn about the different types of treatments doctors use for children with desmoplastic infantile ganglioglioma (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 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 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 a tumor 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.
How DIG is treated
In many cases, a team of doctors works with a child and the 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 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.
The most common types of treatments used for DIG are described below. Your child’s care plan also includes treatment for symptoms and side effects, an important part of care for DIG.
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, which is 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:
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 or unresectable. 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.
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Occasionally, chemotherapy is used for children with DIG. Chemotherapy is the use of drugs to destroy tumor cells, usually by keeping them from growing, dividing, and making more cells. 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. Chemotherapy 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. Chemotherapy 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.
Chemotherapy is often given through an intravenous (IV) tube placed into a vein using a needle or swallowed orally (as a pill, capsule, or suspension). If your child is given oral medications, be sure to ask the health care team about how to safely store and handle them.
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 chemotherapy.
The medications used to treat DIG 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 tumor medications, causing unwanted side effects or reduced effectiveness. Learn more about your child’s prescriptions by using searchable drug databases.
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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 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 child's 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 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.
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 or 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 recurrent DIG. 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 your child's health care team about these feelings and ask about support services to help your family 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 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 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 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.
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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 people with a brain tumor. Use the menu to choose a different section to read in this guide.