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Care for children diagnosed with ependymoma doesn’t 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.
This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. Follow-up care recommendations are specific to each child.
The following factors can affect your child’s recovery from ependymoma:
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 doctor will also 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 two to three 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.
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. Some children may need a tracheostomy, a surgical opening in the windpipe to help them breathe, and/or a gastrostomy, a surgical opening into the stomach where a feeding tube is inserted, after surgery. 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 create a treatment summary to keep track of the treatment your child received and develop a survivorship care plan once treatment is completed.
Some children continue to see their oncologist, while others transition back to the general 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 your 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, as well as 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 and it describes how to cope with challenges in everyday life after a diagnosis of ependymoma. Or, use the menu on the side of your screen to choose another section to continue reading this guide.