Central Nervous System Tumors (Brain and Spinal Cord) - Childhood: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 06/2022

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

Care for children diagnosed with a central nervous system (CNS) tumor does not end when active treatment has finished. Your child’s health care team will continue to check that the tumor has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for a CNS tumor 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.

Rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent as possible. Learn more about this type of rehabilitation.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the tumor has come back. A tumor 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, but testing recommendations depend on several factors, including the type and stage/grade of the tumor first diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress.

Managing long-term and late side effects of a childhood CNS tumor

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects or late effects and may develop months or even years after diagnosis.

Late effects of childhood CNS tumors include delayed development, learning problems, secondary cancers, hormone deficiencies, delayed growth, and balance and vision problems. Children may have problems with memory, thinking, attention, and learning. They may also have an increased risk of anxiety and depression.

Based on the type of treatment your child received, the doctor will recommend certain examinations and tests to check for late effects. For example, radiation therapy to the head or spine can cause cognitive and endocrine (hormonal) symptoms over time. The severity of these symptoms varies greatly from person to person, depending on your child’s age and how much radiation therapy they received. Similarly, the risks and potential side effects of surgery vary widely, depending on the location of the tumor and how it grew. The risks of chemotherapy and second cancers also strongly depend on the treatment, including the specific drugs and doses used. Your child’s doctor will talk with you about these risks and recommend the necessary cancer screening tests.

Usually, follow-up tests include a computed tomography (CT) scan or magnetic resonance imaging (MRI) of the brain and/or spine, hormone tests, and tests to check for how well the brain is working and how a child is growing and developing. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer 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 your child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, they have a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. The American Society of Clinical Oncology (ASCO) offers forms to help create a treatment summary to keep 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 pediatrician, primary care doctor, or another health care professional. This decision depends on several factors, including the type and stage of the 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 their 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 them 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 their lifetime.

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