What happens after treatment for retinoblastoma?
Following treatment for retinoblastoma, the main concerns for most families are the immediate and long-term effects of the tumor and its treatment, and concerns about the possibility of 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.
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 frequently 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 irregularities related to 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 treated with radiation therapy, laser therapy, cryotherapy, or treatment other than removal of the eye, close follow-up exams by an ophthalmologist are very important. 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 completely destroyed, to find recurrences as early as possible, and to find problems with vision 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 warning of cancer coming back or long-term side effects of treatment.
Last Medical Review: 08/06/2012
Last Revised: 08/06/2012