Ependymoma - Childhood: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 10/2018

ON THIS PAGE: You will read about your child’s medical care after cancer treatment is finished and why this follow-up care is important. Use the menu to see other pages.

Care for children diagnosed with ependymoma does not end when active treatment has finished. Your child’s health care team will continue to check to make sure the tumor has not returned, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for a brain tumor, including ependymoma, 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. Follow-up care recommendations are specific to each child.

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

  • Tumor location

  • How much of the tumor could be removed during surgery

  • The need for and type of treatment after surgery

  • Your child’s age during treatment.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Cancer 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. However, testing recommendations depend on several factors, including the type of tumor originally diagnosed and the types of treatment given.

MRI scans are often recommended to watch for signs that the tumor is growing or has come back. If a tumor does come back, it is most likely to do so within the first several years after the first diagnosis. That’s why scans are performed more often during the first 2 to 3 years after treatment, and less often thereafter. However, ependymoma can recur many years after initial treatment, and long-term follow-up care is extremely important.

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 ependymoma

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 and include physical problems, such as heart and lung problems and second cancers, and emotional and cognitive (memory, thinking, and attention) problems, such as anxiety, depression, and learning difficulties.

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. Some children may need a combination of rehabilitative services, including physical therapy and occupational therapy for nervous system side effects from the tumor or its treatment, speech therapy, hearing assistance, and cognitive therapy. Learn more about rehabilitation. After surgery, some children may need a tracheostomy or a gastrostomy. A tracheostomy is a surgical opening in the windpipe to help with breathing. A gastrostomy is a surgical opening into the stomach where a feeding tube is inserted. Others may develop hormonal problems or other new problems if the tumor recurs.

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 the child’s medical information. The doctor will help you create this. 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. ASCO offers forms to help 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 his or her 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 him or her 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 his or her lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a diagnosis of ependymoma. Use the menu to choose a different section to read in this guide.