What Happens After Treatment for Retinoblastoma?

During and after treatment for retinoblastoma, the main concerns for most families are the short- and 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 this process that offers your child the best chance for recovery and long-term survival.

Follow-up exams and tests

Once treatment is finished, your 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, 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 or spread, or any growth problems related to the surgery. It’s 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 (eye doctor) are very important to look for signs of the cancer coming back or other problems. In children with hereditary retinoblastoma, it’s 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’s very important that even after completing all treatments, children are examined regularly by specialists.

During these exams, 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’s 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.

Keeping good medical records after treatment for retinoblastoma

As much as you might want to put the experience behind you once treatment is done, it’s very important to keep good records of your child’s medical care during this time. This can be very helpful for your child later on as an adult and for his or her doctors. Gathering these details during or soon after treatment may be easier than trying to get them at some point in the future. Be sure your child’s doctors have the following information (and always keep copies for yourself):

  • A copy of the pathology report(s) from any biopsies or surgeries
  • If your child had surgery, a copy of the operative report(s)
  • If your child stayed in the hospital, copies of the discharge summaries that the doctors wrote when he or she was sent home
  • If chemotherapy was given, a list of the drugs, drug doses, and when they were given
  • If radiation therapy was given, a summary of the type and dose of radiation and when and where it was given
  • If genetic testing was done, the results of those tests
  • The names and contact information of the doctors who treated your child’s cancer

It’s also very important to keep health insurance coverage. Tests and doctor visits cost a lot, and even though no one wants to think of the cancer coming back, this could happen.

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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