Late and Long-Term Effects of Treatment for Retinoblastoma

With major advances in treatment in recent decades, most children treated for retinoblastoma are now expected to have normal lifespans. But some of the treatments needed to cure the cancer 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 used, the doses of treatment, and the age of the child when being treated. These late effects can include:

  • Reduction or loss of vision in the affected eye(s)
  • Deformities in the bones around the eye (especially after surgery or external radiation)
  • Reduced kidney function
  • Heart problems after getting certain chemotherapy drugs
  • Slowed or delayed growth and development
  • Changes in sexual development and ability to have children (see Fertility and Women With Cancer and Fertility and Men With Cancer)
  • Increased risk of other cancers (especially in children with hereditary retinoblastoma – see the section Second Cancers After Retinoblastoma)

Other complications from treatment are possible as well. Your child’s doctor should carefully review any possible problems with you.

Long-term follow-up care

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 can be treated.

It’s 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 read them on 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 discuss them with your doctor.

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

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master's-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Last Medical Review: March 12, 2015 Last Revised: March 12, 2015

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