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After Treatment TOPICS

What happens after treatment for retinoblastoma?

After treatment for retinoblastoma, the main concerns for most families are the short- and long-term effects of the tumor and its treatment, and concerns about the cancer coming back. It is certainly normal to want to put the tumor and its treatment behind you and to get back to a life that doesn’t revolve around cancer. 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 and tests

Once treatment is finished, the health care team will discuss a follow-up schedule with you, including which tests should be done and how often. It is very important to go to all follow-up appointments. Follow-up is needed to check for cancer recurrence, as well as possible side effects of certain treatments. Doctor visits and tests are done more often at first. If nothing abnormal is found, the time between tests can then be extended.

If a child with retinoblastoma in only one eye has been treated by enucleation (removal of the eye), regular exams are needed to look for tumor recurrence, spread, or any growth problems related to the surgery. It is also important to have the remaining eye checked regularly so that if a second retinoblastoma develops later on it can be found and treated as early as possible.

For children who have had treatment other than removal of the eye, close follow-up exams by an ophthalmologist are very important to look for signs of the cancer coming back or other problems. In children with hereditary retinoblastoma, it is very common for new tumors to form until they are 3 or 4 years old. This is not a failure of the treatment, but the natural process in bilateral retinoblastoma. Therefore, it is very important that even after completing all treatments, children are examined regularly by specialists.

General anesthesia (where the child is asleep) may be needed to keep a young child still enough for the doctor to do a thorough eye exam. This is done to be certain the cancer has been destroyed, to find recurrences as early as possible, and to look for problems caused by treatments.

It is important for you to report any new symptoms your child is having, such as pain or vision problems, to your doctor right away, since they could be an early sign of cancer coming back or long-term side effects of treatment.

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