Keeping good medical records for neuroblastoma

As much as you may want to put the experience behind you once treatment is completed, it is 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(s) from any biopsies or surgeries
• If your child had surgery, a copy of the operative report(s)
• If your child stayed in the hospital, copies of the discharge summaries that doctors prepare when patients are sent home
• If your child received chemotherapy or other medicines for the cancer, a list of the drugs, drug doses, and when they were given

If your child got radiation, a summary of the type and dose of radiation and when and where it was givenLong-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 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 help keep their immune system in check.

Because of major advances in treatment, more children treated for neuroblastoma are now surviving into adulthood. Doctors have learned that the treatment may 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.

Treating childhood cancer requires a very specialized approach, and so does the care and follow-up after treatment. The earlier any problems can be recognized, the more likely it is they can be treated effectively.

Neuroblastoma survivors are at risk, to some degree, for several possible late effects of their treatment. This risk depends on a number of factors, such as the specific cancer treatments they received, doses of treatment, and age when receiving the treatment. Late effects of treatment can include:

• Heart or lung problems (due to certain chemotherapy drugs or radiation therapy)
• Slowed or decreased growth and development (especially after a stem cell transplant)
• Bone damage or thinning of bones (osteoporosis)
• Changes in sexual development and ability to have children (especially in girls)
• Changes in intellectual function with learning problems
• Development of second cancers, such as leukemia, later in life. These are not common, but they can occur.

There may be other possible late complications from treatment as well. Your child's doctor should carefully review any possible problems with you before your child starts treatment.

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 can help you know what to watch for, what type of screening tests should be done to look for problems, and how late effects may be treated.

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. To learn more, ask your child's doctors about the COG survivor guidelines. You can also download them for free at the COG Web site: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines available (as “Health Links”) on the site as well, but we urge you to review them with a doctor.

For more about some of the possible long-term effects of treatment, see our document, Children Diagnosed With Cancer: Late Effects of Cancer Treatment.