ON THIS PAGE: You will learn about the different types of treatments doctors use for children with brain stem glioma. 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. 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 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. For brain stem glioma, a neuro-oncologist may also be involved with treatment. A neuro-oncologist is a doctor who specializes in CNS tumors. 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.
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.
Descriptions of the common types of treatments used for brain stem glioma are listed below. Your child’s care plan may also include treatment for symptoms and side effects, an important part of care.
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. The main types of treatments used for brain stem glioma in children are radiation therapy, chemotherapy, and surgery. Sometimes, these treatments are used together.
The treatment of brain stem glioma for children with the genetic condition neurofibromatosis type 1 (NF1) may differ. A tumor in a child with NF1 may be low-grade even though it looks diffuse. Therefore, an approach called "active surveillance" or "watchful waiting" may be recommended. This approach is when the patient is closely monitored to watch for signs that the tumor is worsening. Treatment would begin if the tumor started to grow and spread.
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 child's doctors work together to choose treatments that fit the goals of your child’s care. Shared decision making is particularly important for brain stem glioma because there are different treatment options. Learn more about making treatment decisions.
Radiation therapy is the most common treatment for children with brain stem glioma. 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. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.
Proton beam therapy is a type of external-beam radiation therapy that uses protons rather than x-rays. It is a newer type of radiation therapy that may be an option for children with brain stem glioma. At high energy, protons can destroy cancer cells.
Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Because radiation therapy can sometimes cause problems with the growth and development of a child’s brain, the doctor may choose to treat the tumor a different 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.
Chemotherapy is the use of drugs to destroy tumor cells, usually by keeping the tumor cells from growing, dividing, and making more cells. Chemotherapy is given by a medical oncologist, which is a doctor who specializes in treating a tumor with medication, or a pediatric oncologist.
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 by 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.
Chemotherapy by itself is not an effective treatment for brain stem glioma. Sometimes, a doctor may use chemotherapy before, during, or after 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.
The medications used to treat cancer are continually being evaluated. Talking with your child’s doctor is often the best way to learn about the medications prescribed for you/your child, their purpose, and their potential side effects or interactions with other medications. It is also important to let your doctor know if you are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications. Learn more about your child’s prescriptions by using searchable drug databases.
Learn more about the basics of chemotherapy.
Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. A neurosurgeon is a doctor who specializes in treating a CNS tumor using surgery. Surgery is used to treat brain stem glioma only when the tumor looks focal on an MRI scan (see Diagnosis). This means that it may be possible to remove the tumor without damaging the brain, such as when a tumor grows out from the brain stem instead of into the brain stem. Before surgery, talk with your child's health care team about the possible side effects from the specific surgery your child will have. Learn more about the basics of surgery.
For most children with diffuse types of brain stem glioma, surgery is not recommended or possible because of the location of the tumor and the risk involved. This type of tumor may be called inoperable or unresectable. The doctor will recommend other treatment options.
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.
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 grade of 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 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 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.
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 your child’s doctor about the possibility of the tumor returning. Understanding your child’s risk of recurrence and the treatment options may help you feel more prepared if the disease does return. Learn more about coping with the fear of recurrence.
If the tumor does return 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 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. Treatment for recurrent brain stem glioma depends on the type of tumor, such as whether it is diffuse or focal, and the type of treatment that was given for the original tumor. Depending on the situation, the doctor may recommend either surgery or chemotherapy. 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.
A recurrent tumor may bring up emotions such as disbelief or fear. You and your family are encouraged to talk with the health care team about these feelings and ask about support services to help you cope. Learn more about dealing with a recurrence.
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 advanced brain stem glioma 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 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.
Some families find comfort in getting involved in research efforts to advance knowledge about brain stem glioma. Learn more about tissue donation. Please note that this link takes you to a separate website.
The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for children with a CNS tumor. Use the menu to choose a different section to read in this guide.