Late and Long-Term Effects of Neuroblastoma and Its Treatment

Neuroblastoma can cause long-lasting side effects. Most of the long-term side effects depend on what kind of treatment a child had, where the tumor was located, and how old the child was when treated. Children who received seeveral kinds of treatment (surgery, radiation, chemotherapy, immunotherapy, etc.) are more likely to have serious long-term side effects.

Because of major advances in treatment, most children treated for neuroblastoma are now surviving into adulthood. Doctors have learned that the treatment can affect children’s health later in life, so watching for health effects as they get older has become more of a concern in recent years.

Neuroblastoma survivors are at risk for several possible late effects from their treatment. It’s important to discuss what these possible effects might be with your child’s medical team.

After treatment, the cancer care team will create a Survivorship Care Plan describing the treatments given and what that tells you about your child's risk of late effects. The plan will also describe how the child should be monitored for these problems. Most children do not experience all the problems they might be at risk for, but if problems do come up, it's important to find them early, so they can be treated effectively.

Depending on the treatment and other factors, late effects after neuroblastoma treatment might include:

• Hearing loss
• Problems with bones and muscles, like scoliosis (curving of the spine)
• Thyroid problems
• Problems with growth and development
• Fertility problems
• Neurological (nervous system) problems
• Second cancers, including leukemia
• Emotional or psychological issues

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, which can lead to symptoms such as rapid eye movements, muscle spasms, and lack of coordination. This is called opsoclonus myoclonus syndrome. Sometimes this syndrome improves or goes away after the neuroblastoma is treated, but some children might have longer-term problems such as learning disabilities, delays in muscle development, language problems, and behavioral problems. These children may need further treatment with drugs that suppress the immune system, such as corticosteroids or intravenous immunoglobulin (IVIG).

To learn more about some of the possible long-term effects of treatment, see Late Effects of Childhood Cancer Treatment.

Long-term follow-up guidelines

To help increase awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives, the Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines are used to create a child's Survivorship Care Plan. They can also help you know what to watch for, what types of screening tests should be done to look for problems, and how late effects can be treated.

To learn more, ask your child’s doctors about the COG survivor guidelines. You can also download them for free at the COG website: www.survivorshipguidelines.org. The guidelines are written for health care professionals, but patient versions of some of the guidelines are available (as “Health Links”) on the site as well.