After treatment, the main concerns for most families are the immediate and long-term effects of the tumor and its treatment, and concerns about the tumor still being present or coming back.

It is certainly normal to want to put the tumor and its treatment behind you, and to get back to a 'normal' life. But it's important to realize that follow-up care is a central part of this process that offers your child the best chance for recovery and long-term survival.

Looking for tumor progression or recurrence

In some cases, even with slow growing tumors, some of the tumor may still be present after treatment. Even with childhood tumors that are treated successfully, it is important to remember that some may come back even many years later. (Your child's doctor should be able to give you an idea of how likely this might be in his or her case.)

Imaging tests (CT or MRI scans) and physical exams will be done after treatment to help determine how successful it was. Whether there is evidence of the tumor still being present or not, your child's cancer care team will probably want to follow your child closely, especially in the first few months and years after treatment to make sure there is no progression or recurrence. Depending on the type and location of the tumor and the extent of the treatment, the team will decide which tests should be done and how often.

During this time, it is important to report any new symptoms to your child's doctor right away, so that the cause can be determined and treated, if need be. Your child's doctor can give you an idea of what to look for. Should further treatment be needed at some point, the doctor will go over potential treatment options with you.

Recovering from the effects of the tumor and its treatment

The possible effects of the tumor and its treatment on physical and mental function can range from very mild to fairly severe. Fortunately, a child's brain is often better able to adjust to changes than an adult's.

Once your child has recovered from treatment, doctors will try to determine the extent of any damage to the brain or other areas. In a very young child this may take time. It is likely that physical exams and imaging tests (CT or MRI scans) will be done after treatment to determine the extent and location of any changes in the brain.

Several types of doctors and other health professionals may be involved in assessing any damage and helping your child recover.

A neurologist (a doctor who specializes in treating the nervous system) will assess your child's physical coordination and muscle strength. If there is muscle weakness or paralysis, your child will be seen by physical and/or occupational therapists and perhaps a physiatrist (a doctor who specializes in rehabilitation) while in the hospital and/or as an outpatient for physical therapy.

If the speech center of the brain is damaged, a speech therapist will help your child improve talking and communicating.

If needed, an ophthalmologist (a doctor who specializes in eye problems) will check your child's vision and an audiologist can check your child's hearing. If problems with vision or hearing are found, your child may require some type of special education.

After surgery, your child may also be seen by a psychiatrist or psychologist to determine the extent of damage caused by the tumor and surgery. If your child gets radiation therapy and/or chemotherapy, this process may be repeated again after treatment is finished. The doctor will document your child's development in areas such as general intelligence, speech and hearing, memory, and learning skills.

If your child is in school, a teacher working with the hospital (called the school liaison) may become involved. Before going (back) to school, the liaison may help pave the way for your child by talking with the teachers, explaining your child's problems, and discussing any special education techniques that may be required. In some cases, medicines may be helpful as well. (For more information, see the separate American Cancer Society document, Children Diagnosed with Cancer: Returning to School.)

If the tumor was in or near the base of the brain (such as a craniopharyngioma) or radiation therapy was given to this area, pituitary hormone production may be affected. Symptoms of pituitary problems can include fatigue, listlessness, poor appetite, cold intolerance, and constipation, which may point to low levels of cortisol and/or thyroid hormone. Other problems can include delayed growth and/or sexual maturation. Sometimes these symptoms may appear even before treatment, as a result of the tumor.

If there is reason to think the pituitary may have been affected, your child may be seen by an endocrinologist (a specialist in hormone disorders). Hormone treatments may be prescribed to restore normal hormone levels. For example, growth hormone can be given to restore normal growth.

Long-term effects

A major concern of both parents and doctors is the potential for long-term effects from treatment. Some of these, such as learning problems or delayed growth and development, were mentioned above. Others may include effects on the reproductive system or an increased risk of other cancers later in life. While doctors do everything they can to minimize the chance of these complications, in some cases they may be an unavoidable part of ensuring the tumor is treated properly.

It is very important to discuss possible long-term complications with your child's health care team, and to make sure there is a plan in place to watch for these problems and treat them, if need be. For more information, see the separate American Cancer Society document, Childhood Cancer: Late Effects of Cancer Treatment.

Keeping good medical records

As much as you might want to put the experience behind you once treatment is completed, it is also very important to keep good records of your child's medical care during this time. Eventually, your child will grow up, be on his or her own, and have new doctors. It is important that he or she be able to give the new doctors the exact details of the cancer diagnosis and treatment. Gathering the details soon after treatment may be easier than trying to get them at some point in the future. There are certain pieces of information that your child's doctors should have, even after the child has become an adult. These include:

• A copy of the pathology report from any biopsies or surgeries.
• If there was surgery, a copy of the operative report.
• If there were hospitalizations, a copy of the discharge summaries (forms that doctors must prepare when patients leave the hospital).
• A list of the final doses of each chemotherapy drug or other drug your child received.
• If there was radiation, a final summary of the dose and field.

Last Medical Review: 04/07/2008
Last Revised: 05/13/2009