Living as a Retinoblastoma Survivor
During and after treatment for retinoblastoma, the main concerns for most families are the daily aspects of getting through treatment and beating the cancer. After treatment, the concerns tend to shift toward the long-term effects of the cancer and its treatment, and concerns about the cancer still being there or coming back.
It’s 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 a process that offers your child the best chance for recovery and long-term survival.
Follow-up exams and tests
Once treatment is finished, your child's health care team will discuss a follow-up schedule with you, including which tests should be done and how often. It’s very important to go to all follow-up appointments. Follow-up is needed to check for cancer recurrence (or new cancers), 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 removal of that eye (enucleation), regular exams are needed to look for tumor recurrence or spread, or an