In general, tumors in children are uncommon, so it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That’s why more than 60% of children with cancer are treated as part of a clinical trial. Clinical trials are research studies that compare standard treatments (the best proven treatments available) to newer treatments that may be more effective. Investigating new treatments involves careful monitoring using scientific methods, and all participants are followed closely to track their health and progress.

To take advantage of these newer treatments, all 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. 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, nutritionists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Descriptions of the most common treatment options for DIG are listed below. 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. 

Surgery

Surgery is the most common treatment for a child with DIG, and often it is the only treatment necessary. Surgery is the removal of the tumor and surrounding 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, including the use of cortical mapping (which allows doctors to identify certain areas of the brain that control the senses, language, and motor skills) and enhanced imaging devices to give surgeons more tools to plan and perform the surgery.

After surgery, the treatment plan is determined based on the following criteria:

The amount of tumor removed

The age of the child

The presence of metastases (disease spread)

Sometimes, surgery cannot be performed because the tumor cannot be reached or is near a vital structure; these types of tumors are called inoperable. In these situations, the doctor will recommend treating the tumor in another way.

Side effects from surgery for DIG can vary; talk with your child’s doctor about possible short-term and long-term side effects with their doctor. 

Chemotherapy

Chemotherapy is the use of drugs to kill tumor cells, usually by stopping the cells’ ability to grow and divide. Systemic chemotherapy is delivered through the bloodstream to reach tumor cells throughout the body. Chemotherapy is given by a pediatric oncologist or a medical oncologist, a doctor who specializes in treating a tumor with medication. A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

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. The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished.

The medications used to treat a 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. 

Palliative/supportive care

A tumor and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the tumor, an important part of care is relieving a child’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the child with his or her physical, emotional, and social needs.

Palliative care can help a child at any stage of illness. Children often receive treatment for the tumor and treatment to ease side effects at the same time. In fact, people who receive both often have less severe symptoms, better quality of life, and families report they are more satisfied with treatment.

Before treatment begins, talk with your child’s health care team about the possible side effects of the specific treatment plan and supportive care options. And during and after treatment, be sure to tell your child’s doctor or another health care team member if your child is experiencing a problem, so it is addressed as quickly as possible. 

Recurrent DIG

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

A remission can be temporary or permanent. This uncertainty leads to many survivors and their families feeling worried or anxious that the tumor will come back. While many remissions are permanent, it’s important to talk with the doctor about the possibility of the tumor returning. Understanding the risk of recurrence and the treatment options may help people feel more prepared if the tumor does return. 

If the tumor does return after the original treatment, it is called a recurrent tumor. DIG most often comes back in the same place as the original tumor (called a local recurrence).

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, you and your child’s doctor will talk about the treatment options. Often the treatment plan will include the therapies described above (such as surgery and chemotherapy) but may be used in a different combination or given at a different pace. Your child’s doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent tumor.

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. 

If treatment fails

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

Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to 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. 

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.

Side Effects

Fear of treatment side effects is common after a diagnosis of a brain tumor, but it may help to know that preventing and controlling side effects is a major focus of your child’s health care team. This is called palliative or supportive care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

Common side effects from each treatment option for DIG are described in detail within the Treatment section.  Side effects depend on a variety of factors, including the tumor’s stage, the length and dosage of treatment(s), and your child’s overall health.

Before treatment begins, talk with your child’s doctor about possible side effects of each type of treatment your child will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. And, ask about the level of caregiving your child may need during treatment and recovery, as family members and friends often play an important role in the care of a person with DIG. 

In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies. 

During and after treatment, be sure to tell the health care team about the side effects your child experiences, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care.

After Treatment

After treatment for DIG ends, talk with your child’s doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. All children treated for a brain tumor, including DIG, should have life-long, follow-up care.

After-treatment care recommendations are specific to each child, because there are many factors that can affect a child’s recovery from DIG, such as tumor location, whether the tumor could be removed, the need for and type of treatment after surgery, and the child’s age at the time of treatment. Follow-up MRI scans after surgery are often recommended to watch for signs of tumor recurrence or growth.

Based on the type of treatment the child received, the doctor will determine what examinations and tests are needed to check for long-term side effects and the possibility of secondary cancers. Your child’s doctor can recommend the necessary screening tests. Follow-up care should also address the child’s quality of life, including any developmental or emotional concerns. 

The child’s family is encouraged to organize and keep a record of the child’s medical information. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. The doctor’s office can help you create this. This information will be valuable to doctors who care for your child during his or her lifetime. 

Children can also 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 a balanced diet, and participating in regular physical activity. Talk with your doctor about developing a plan that is best for your child’s needs.

Latest Research

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 diagnostic and treatment options best 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 different types of tumors.

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

Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current DIG treatments in order to improve patients’ comfort and quality of life.