After Treatment

After treatment for retinoblastoma ends, talk with your child’s doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. All children treated for cancer, including retinoblastoma, should have life-long, follow-up care.

At first, follow-up visits will focus on ensuring the cancer is gone and hasn’t returned. Once a child has been free of retinoblastoma for two to four years following treatment, and is considered cured, the emphasis during periodic follow-up visits changes. Pediatric oncologists will focus on the quality of the child’s life, including developmental and emotional concerns.

Most young children adapt well to the loss of one eye if enucleation took place. Rarely, both eyes will require removal to save the child’s life. If both eyes are removed, the local educational system is required to provide special services. Parents are encouraged to investigate the school’s services and advocate on their child’s behalf. Other rehabilitation services may also be needed to help the child cope with the vision loss.

Based on the type of treatment the child received and whether the child has the genetic form of retinoblastoma, the doctor will determine what evaluations are needed to check for long-term effects. This may include imaging studies (CT scan or MRI) and blood tests. Counseling will also be provided in the case of children who have an increased risk of additional tumors later in life, such as those with retinoblastoma in both eyes and those with one eye affected and who have a family history of the disease. Annual visits to specialized ophthalmologic and medical oncologists are necessary in order to fully monitor the child’s recovery and to increase the probability that a second cancer will be detected in its earliest stages. Follow-up care should also address the child’s quality of life, including any developmental or emotional concerns. Learn more about Childhood Cancer Survivorship.

The child’s family is encouraged to organize and keep a record of the child’s medical information, so that as the child enters adulthood, he or she has a clear, written history of the diagnosis and details of the treatment given. The doctor’s office can help you compile this, and it should include recommendations from the doctor about the schedule for follow-up care. This information will be valuable to doctors who care for your child during his or her lifetime.

Children who have had cancer can also enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating a balanced diet, and participating in regular physical activity.

To learn about the terms used in this section, read the Cancer.Net Feature: Cancer Terms to Know: After Treatment.