ON THIS PAGE: You will learn about the different types of treatments doctors use for children with ependymoma. Use the menu to see other pages.
In general, cancer in children is 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 research studies. 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 and teens with a brain tumor should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating cancer in these younger age groups and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. A doctor who specializes in treating children with a brain tumor is called a pediatric neuro-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 ependymoma is treated
In many cases, a team of doctors works with the patient and the family to provide care. This is called a multidisciplinary team. Pediatric cancer centers often have extra support services for patients 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.
The common types of treatments used for childhood ependymoma are described below. Your child’s care plan may also include treatment for symptoms and side effects, an important part of care for ependymoma.
Treatment options and recommendations depend on several factors, including the type of tumor, its grade, 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 your child can expect while receiving 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 ependymoma because there are different treatment options. Learn more about making treatment decisions.
Surgery is usually the first treatment for ependymoma. 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 tumor in the brain or spine with surgery.
The goals of surgery are to get a tissue biopsy (see Diagnosis) to diagnose ependymoma and to remove as much of the tumor as possible. The prognosis of children with ependymoma is dependent upon whether the tumor can be fully removed by surgery, called a total resection. Occasionally, more than 1 surgery is necessary to achieve a total resection of the tumor.
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. And better imaging tests give surgeons more tools to plan and perform surgery.
Sometimes, surgery cannot be performed because the tumor is located in a place that the surgeon cannot reach or is near a vital structure. These tumors are called inoperable or unresectable. If the tumor is inoperable, the doctor will recommend other treatment options.
After surgery, the doctor will create a treatment plan based on the following criteria:
The amount of tumor removed
Your child’s age
Whether the tumor has spread to another place
Side effects from surgery for ependymoma 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 managed. Learn more about the basics of surgery.
Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist.
Radiation therapy is commonly used after surgery to treat ependymoma. If the cancer has not spread, radiation therapy is directed at the tumor. If the cancer has spread, radiation therapy may be directed at the whole brain and the spine. It may also be used to treat a tumor that cannot be removed with surgery. In the past, there was concern about using radiation therapy for children younger than 3 years old, but more recent clinical trials show that focal radiation therapy is safe and effective for children with ependymoma as young as 1 year old.
The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. Radiation therapy may consist of particles called X-rays (also called photons) or protons. A radiation therapy regimen, or schedule, for ependymoma usually consists of approximately 30 to 33 treatments given over a period of 6 to 7 weeks.
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. Learn more about the basics of radiation therapy.
Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells. Chemotherapy is given by a pediatric oncologist or medical oncologist, a doctor who specializes in treating cancer with medication.
Chemotherapy alone is often not effective to treat ependymoma, but it may be beneficial if it is used in combination with surgery and/or radiation therapy (see above). Chemotherapy has also helped shrink a tumor so that surgeons are able perform a second surgery to remove a tumor that could not be removed during a first surgery (see Latest Research). Clinical trials of chemotherapy after surgery and radiation therapy are currently underway.
There are different ways to give chemotherapy. 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 chemotherapy. 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 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 cancer
Cancer 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 cancer.
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 cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative care along with treatment for the cancer 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 cancer, 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 being recommended. 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 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 cancer 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 brain tumor will come back. While many remissions are permanent, it is important to talk with the doctor about the possibility of the cancer 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 cancer returns after the original treatment, it is called recurrent cancer. It may come back in the same place, called a local recurrence, nearby, called a regional recurrence, or in another place, called a 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. Often the treatment plan will include the treatments described above such as surgery, radiation therapy, 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 ependymoma, sometimes it is not. If a child’s tumor cannot be cured or controlled, this is called advanced or terminal cancer. This diagnosis is stressful, and advanced ependymoma 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. You and your family are encouraged to talk with the health care team about hospice care 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.
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 cancer. Use the menu to choose a different section to read in this guide.