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ON THIS PAGE: You will read about your child’s medical care after treatment is finished and why this follow-up care is important. To see other pages in this guide, use the colored boxes on the right side of your screen, or click “Next” at the bottom.
After treatment for craniopharyngioma ends, talk with your child’s doctor about the follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. All children treated for craniopharyngioma should have life-long follow-up care.
Follow-up care is important to determine whether the tumor has returned or is starting to grow again. It is also important to monitor the person’s visual, endocrine (hormone), and metabolic functions. As a result of the tumor and its treatment, hormone replacement therapy (see Treatment Options) is almost always necessary. There are often problems with slow metabolism and weight gain, so a regular exercise program and dietary changes are often recommended.
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 and because it is unlikely to come back, 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.
Based on the type of treatment your child received, the doctor will determine what examinations and tests are needed to check for long-term side effects and the possibility of secondary tumors. Your child’s doctor can recommend the necessary screening tests. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns. Learn more about survivorship.
The child’s family is encouraged to organize and keep a record of the child’s medical information. 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. The doctor’s office can help you create this. This information will be valuable to doctors who care for your child during his or her lifetime. ASCO offers treatment summary forms to help keep track of the treatment your child received and develop a survivorship care plan once treatment is completed.
Children who have had a tumor can also enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating a balanced diet, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about the next steps to take in survivorship.
To continue reading this guide, choose “Next” (below, right) for a list of questions you may want to ask the doctor. Or, use the colored boxes located on the right side of your screen to visit any section.