Many children with neuroblastoma have a good chance of surviving following appropriate treatment.

After treatment for neuroblastoma, the main concerns for most families are the immediate and long-term effects of the tumor and its treatment, and concerns about possible recurrence of the tumor.

It is certainly understandable 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.

Follow-up exams

After treatment, the doctor will likely order follow-up tests, which may include lab tests and imaging tests (MIBG scans, PET scans, ultrasound, CT scans, and/or MRI scans) to see if there is any tumor remaining. The tests done will depend on the risk group and the size and location of the tumor.

Because there is a chance that the cancer may return after initial treatment, it is very important to keep all follow-up appointments and to report any new symptoms to your child's doctor right away. The health care team will discuss a follow-up schedule with you, including which tests should be done and how often. Doctor visits, lab tests, and imaging tests to look for signs of recurrence are done more frequently at first. If nothing abnormal is found, the time between tests can then be extended.

Keeping good medical records

As much as you may 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. This can be very helpful for your child and his or her doctors later on as an adult. There are certain pieces of information you should be sure your child's doctors have. These are:

• 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, copies of the discharge summaries that doctors prepare when patients are sent home
• if there was chemotherapy treatment for the cancer, a list of the drugs, drug doses, and when they were given
• if there was radiation, a summary of the type and dose of radiation and when and where it was given

Long-term effects of neuroblastoma and its treatment

Both neuroblastoma itself and its treatment can sometimes result in long lasting effects.

In very rare instances and for unknown reasons, in some children with neuroblastoma the body's immune system attacks the child's normal nerve tissue. This can lead to 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 have problems with the eyes or with muscle twitches may need further treatment with corticosteroids or other hormones to suppress their immune system.

Because of major advances in treatment, more children treated for cancer are now 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 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. Late effects of cancer treatment can include:

• heart or lung problems (due to certain chemotherapy drugs or radiation therapy)
• slowed or decreased growth and development (in the bones or overall)
• changes in sexual development and ability to have children
• changes in intellectual function with learning problems
• development of second cancers

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 needed. For more information on these and other possible late effects, please see our document, Childhood Cancer: Late Effects of Cancer Treatment.

Last Medical Review: 10/22/2008
Last Revised: 10/22/2008