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 craniopharyngioma 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 craniopharyngioma should have life-long, follow-up care.

Your child’s follow-up care may include regular physical examinations, magnetic resonance imaging (MRI) scans, or both. Doctors want to keep track of your child’s recovery in the months and years ahead. Follow-up care is important to find out whether the tumor has returned, called a recurrence, or is starting to grow again.

A child treated for craniopharyngioma should have regular MRI scans to check for any growth or recurrence of the tumor. Because craniopharyngioma is slow-growing, MRI scans are often only needed once or twice a year. If your child received radiation therapy, there is a small possibility that a different type of brain tumor may develop years later.

Rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, occupational 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 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 of 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 brain tumor

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 after treatment has ended. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems and second cancers, which is a new cancer that happens in someone who has had another type of tumor before. They also include emotional problems, such as anxiety and depression, and problems with memory, thinking, attention, and learning.

Based on the type of treatment your child received, the doctor will recommend the examinations and tests that are needed to check for late effects. For children with craniopharyngioma, it is important to monitor their weight, visual, endocrine (hormone), and metabolic functions. As a result of the tumor and its treatment, hormone replacement (see below) is often needed. 

It is also important that your child's follow-up care addresses quality of life, including any developmental or emotional concerns.

Weight management

Children who received treatment for craniopharyngioma often have problems with increased appetite, slow metabolism, weight gain, and obesity. A regular exercise program and dietary changes to the foods they eat are often recommended. Consider talking with a registered dietitian nutritionist (RD or RDN) who has experience in helping survivors manage this side effect. There are also clinical trials to help find new ways to manage weight gain for survivors of craniopharyngioma. Talk with your health care team to learn more about these resources.

Hormone replacement

A common presenting symptom and long-term side effect of children with craniopharyngiomas is diabetes insipidus. Diabetes insipidus is a result of a lack of production of a hormone called vasopressin by the pituitary gland, which is responsible for concentrating urine by the kidneys. Diabetes insipidus is treated with a hormone called desmopressin (DDAVP). Sometimes, other hormones produced by the pituitary gland are affected, too.

Hormone replacement is the use of medication to replace hormones that the body cannot produce enough of on its own. It is a type of hormone therapy. Hormone replacement is often necessary for children with craniopharyngioma because the tumor or its treatment may damage parts of the brain that make hormones, including the pituitary gland and the hypothalamus. An endocrinologist is a doctor who specializes in problems with glands and the endocrine system. This specialist will work with you and your child to determine the hormonal therapy that is needed.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood 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 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 of tumor, treatments received, 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 for craniopharyngioma 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 diagnosis of craniopharyngioma. Use the menu to choose a different section to read in this guide.