Surgical Procedures: Surgery and Staging for Retinoblastoma

Author: Marisa Healy, BSN, RN
Last Reviewed:

Retinoblastoma is cancer of the retina. The retina is a thin layer of nerves found in the back of the eye. Retinoblastoma often occurs in young children. It rarely affects adults. Retinoblastoma is the most common eye cancer in children. The disease can affect one or both eyes and often does not metastasize (spread) to other parts of the body.

What is staging and how is it performed?

Once a diagnosis of retinoblastoma has been made, or if there is suspicion of retinoblastoma, the healthcare provider will often order testing to determine the stage of cancer. This may include:

  • Physical Exam: A general physical exam, as well as an overview of the child’s medical history.
  • Eye Exam: May include pupil dilation, which at times may be done under anesthesia, depending on the child’s age.
  • Radiologic Imaging: Imaging such as ultrasound, CAT scan (CT scan), magnetic resonance imaging (MRI), ultrasound of the eye, and/or bone scan may be used to look at the extent of the cancer.
  • Bone Marrow Aspiration and Biopsy: This procedure will remove bone marrow along with a small piece of bone from either the hip or breastbone to look for the spread of disease.
  • Lumbar Puncture: A sample of cerebrospinal fluid is removed from the spinal column to look for spread of the disease to the brain and spinal cord.

In rare cases when retinoblastoma has spread to other parts of the body, it does through the tissue, lymph and blood systems. Cancer stage determines how extensive the cancer is, how far it has spread, and what treatment course should be used. Retinoblastoma is often staged using the International Classification for Intraocular Retinoblastoma, which assigns a group from A to E. The group is based on how much of the eye is affected, with A being the least amount of cancer and E being the most. It is also important to consider if one or both eyes is involved. This grouping guides treatment decisions and whether or not the child’s vision can be saved.

In some cases, surgery may be used. The primary goal is to save the child’s life, but saving their vision is also important. The decision as to which surgical procedure is done depends on the classification group. Some of these surgeries include:

  • Enucleation: The removal of the eyeball and part of the optic nerve.
  • Eye Implant and Artificial Eye Placement: Following an enucleation, an ocular implant is placed and attached to the muscles that move the eye. In a separate surgery done several weeks following surgery, an artificial eye is placed over the previously placed implant. This does not allow for sight, but the implant will be moved by the eye muscles giving the look of a healthy eye.

What are the risks associated with retinoblastoma surgery?

As with any surgery, there are risks and possible side effects. These can be:

  • Bleeding.
  • Infection.
  • Extrusion of the implant (the implant comes out).
  • Loss of vision.

Some people are at a higher risk for issues after surgery. Speak with the healthcare team if you have any concerns about the surgery, its risks, and possible side effects.

What is recovery like?

The healthcare team will let you know if your child will need to be in the hospital after surgery. While most surgeries are done as an outpatient (your child can go home that day), at times a short hospital stay is needed. For 24 to 36 hours after surgery, your child may have a headache, which may be relieved with over-the-counter medications that the care team can recommend. It is normal to have blood-tinged tears after surgery.

You will be instructed on the care of the bandage, which should stay in place for 5 days, unless told otherwise. The healthcare team will go over medications with you, which may include a topical antibiotic and steroid.

Care after surgery may include:

  • Cleanse the outside of the eyelid gently with a clean, warm and soapy wash cloth. Gently pat dry.
  • Avoid your child lifting anything heavier than 10 lb, straining or rubbing the eye for at least 2 weeks after surgery.
  • Do not let the eyelid crust over.
  • Avoid running the shower on the surgical eye for about 10 days after surgery.
  • Return to work/school as advised by your healthcare team, which is often within 2-6 weeks after surgery.
  • Follow the healthcare team’s advice on taking aspirin or blood thinners.

How can I care for myself/ my child?

You and your child may need a family member or friend to help with daily tasks until your child is feeling better. It may take some time before your team tells you that it is ok for your child to go back to their normal activity.

Be sure your child takes the prescribed medications as directed to prevent pain, infection and/or constipation. Call your child’s team with any new or worsening symptoms.

There are ways to manage constipation after surgery. You can change your child’s diet, have them drink more fluids, or take over-the-counter medications. Talk with your child’s care team before giving any medications for constipation. 

Taking deep breaths and resting can help manage pain, keep your child’s lungs healthy after anesthesia, and can promote good drainage of lymphatic fluid. Try to help your child do deep breathing and relaxation exercises a few times a day in the first week, or when you notice they are extra tense.

  • Example of a relaxation exercise: While sitting, close your eyes and take 5-10 slow deep breaths. Relax your muscles. Slowly roll your head and shoulders.

This article contains general information. Please be sure to talk to your care team about your specific plan and recovery.

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