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After Treatment TOPICS

Late and long-term effects of treatment for retinoblastoma

With major advances in treatment in recent decades, most children treated for retinoblastoma are now surviving into adulthood. Doctors have learned that 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.

Just as the treatment of childhood cancer requires a very specialized approach, 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.

Young people treated for retinoblastoma are at risk, to some degree, for several possible late effects of their cancer treatment. It’s important to discuss what these possible effects might be with your child’s medical team.

The risk of late effects depends on a number of factors, such as the specific treatments the child received, the doses of treatment, and the age of the child when being treated. These late effects may include:

  • Reduced kidney function
  • Heart problems after receiving certain chemotherapy drugs
  • Slowed or delayed growth and development
  • Changes in sexual development and ability to have children
  • Increased risk of other cancers (see the next section, “Second cancers”)

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 website: The guidelines are written for health care professionals. Patient versions of some of the guidelines are 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 called Children Diagnosed With Cancer: Late Effects of Cancer Treatment.

Last Medical Review: 12/05/2013
Last Revised: 12/05/2013