Surgical Procedures: Surgery and Staging for Retinoblastoma

When there are cancer cells in the retina of your eye, it is called retinoblastoma. Your retina is a thin layer of nerves found in the back of your eye. Retinoblastoma mostly affects young children and rarely affects adults. Retinoblastoma is the most common eye cancer in children. It can affect one or both eyes and often does not metastasize (spread) to other parts of the body. This article will focus on retinoblastoma in children.

What is staging and how is it done?

Once your child has been diagnosed with retinoblastoma or if your provider thinks they have it, they will often have more testing to figure out the stage of cancer. These tests may be:

• Physical Exam: A physical exam, as well as an overview of your child’s medical history.
• Eye Exam: May include pupil dilation, which at times may be done under anesthesia (medicine to help them sleep), depending on your 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: Some bone marrow, along with a small piece of bone from either the hip or breastbone is removed to look for the spread of disease.
• Lumbar Puncture: A sample of cerebrospinal fluid (CSF) is removed from the spinal column to look for spread of the disease to the brain and spinal cord.

In rare cases, retinoblastoma spreads to other parts of the body. Cancer stage tells how extensive the cancer is, how far it has spread, and what treatment should be used. Retinoblastoma is often staged using the International Classification for Intraocular Retinoblastoma, which gives 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 know if one or both eyes are involved. This grouping helps choose treatments and can help your provider understand if your child’s vision can be saved.

In some cases, surgery may be used. The main goal is to save your child’s life, but saving their vision is also important. Whether or not your child has surgery depends on the classification group. Your child may need:

• Enucleation: The eyeball and part of the optic nerve are removed.
• Eye Implant and Artificial Eye Placement: After an enucleation, an ocular implant is placed and attached to the muscles that move the eye. In a separate surgery done a few weeks later, an artificial (fake) eye is placed over the previously-placed implant. This does not allow for sight, but the implant will be moved by the eye muscles, making it look like a healthy eye.

What are the risks of 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 of issues after surgery. Talk with your provider if you have any concerns about the surgery, its risks, and possible side effects.

What is recovery like?

Your provider 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 provider can recommend. It is normal to have blood-tinged tears after surgery.

A bandage will be placed over the surgical site. The surgical team will tell you when it can be removed. The healthcare team will go over any medications that need to be taken, which may include an antibiotic and a steroid.

After surgery, you may need to:

• Clean the outside of the eyelid gently with a clean, warm, and soapy washcloth. Gently pat dry.
• Avoid letting your child lift anything heavier than 10 pounds, straining, or rubbing their eye for at least 2 weeks after surgery.
• Not let the eyelid crust over.
• Avoid running the shower on the surgical eye for about 10 days after surgery.
• Have your child return to work/school as told by your provider.
• Follow the provider’s advice on taking aspirin or blood thinners.

How can I care for 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 provider tells you that it is okay 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 provider 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 with pain, keep your child’s lungs healthy after anesthesia, and 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 to 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.