Many children with neuroblastoma have a good chance of surviving following aggressive, appropriate treatment. Children with localized tumors and infants younger than 1 year old who have advanced disease but whose tumors show certain favorable characteristics have the best outlook. Their tumors may disappear with little or no treatment. Older children with advanced stage disease are less likely to be cured. There is also a chance that the cancer may return following initially successful treatment. So, it will be very important to keep all follow-up appointments and that you report any new symptoms to your doctor right away. Your doctor will order follow-up tests with radioactive MIBG scans, PET scans, ultrasound, CT scans, or MRI scans to see if there is any tumor left after treatment. The kind of test will depend on whether the tumor has spread.

In very rare instances for unknown reasons, some children with neuroblastoma develop an abnormal reaction in which their immune system attacks their normal nerve tissue. Some of these children have problems such as learning disabilities, delays in muscle and movement development, language problems, and behavioral problems. Children whose tumors arise in the neck or chest and who experience problems with the eyes or with muscle twitches may need additional treatment with steroids or other hormones to suppress their immune system.

Long-Term Effects of Cancer Treatment: Because of significant advances in treatment, more children treated for cancer are surviving into adulthood. With childhood cancer survivors living longer, their health as adults has come more into focus in recent years. Researchers have learned that the effects of childhood cancer treatment may affect that child’s health later in life. This result is known as a “late effect.”

Just as the treatment of childhood cancer requires a very specialized approach, so does aftercare and monitoring for late effects. Careful follow-up after cancer treatment allows for early recognition of and attention to the after-effects of treatment.

Childhood cancer survivors are at risk, to some degree, for several possible late effects of their cancer treatment. This risk depends on a number of factors, such as their particular type of cancer, the specific cancer treatments they received, dosages of cancer treatment, and age when receiving the cancer treatment. These late effects include heart or lung problems after receiving certain chemotherapies or radiation therapy to these parts of the body; slowed or decreased growth and development; changes in sexual development and ability to have children; changes in intellectual function with learning difficulties; and rarely, development of second cancers. For more information on these and other possible late effects, please see our document, "Childhood Cancer: Late Effects of Cancer Treatment."

Moving on: Eventually, treatment will be complete; your child will grow up and be on his or her own. A new doctor, not the pediatric oncologist or pediatrician, will be in charge. It is important that you or your child is able to give the new doctors the exact details of the diagnosis and treatment. There are certain pieces of information you should see that your child’s doctors have, even into adulthood. These are:

• A copy of the pathology report from a biopsy or surgery if there was surgery.
• If there was surgery, a copy of the operative report.
• If there were hospitalizations, a copy of the discharge summaries that every doctor must prepare when patients are discharged from the hospital.
• If there was drug treatment for the cancer, a list of the final doses of each drug your child received.
• If there was radiation, a final summary of the dose and field.
• Finally, certain drugs have specific long term side effects and if you can get a list of these from the pediatric oncologist, this would also help any new primary care physician.