Surgical Procedures: Surgery and Staging for Retinoblastoma
Retinoblastoma is a cancer of the retina, which is located in the back of the eye. The disease typically occurs in young children, rarely affecting adults. Retinoblastoma is the most common eye cancer in children. The disease can affect one or both eyes and rarely metastasizes to other areas of the body.
What is staging and how is it performed?
Once a diagnosis of retinoblastoma has been made, or if there is suspicion that the disease is present, the healthcare provider will typically obtain additional testing to determine the stage of cancer. This may include:
- Physical Exam: This is a general physical exam, as well as an evaluation of your medical history.
- Eye Exam: This includes an eye exam with 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 further evaluate 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 evaluate for the spread of disease.
- Lumbar Puncture: This procedure involves removing a sample of cerebrospinal fluid from the spinal column to evaluate for spread of the disease to the brain and spinal cord.
In rare cases that retinoblastoma spreads 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 will be recommended. Retinoblastoma is typically 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 selection and whether or not the child’s vision can be preserved.
In certain situations, it may be recommended that those with retinoblastoma undergo surgery. The primary goal is to save the child’s life, but preserving vision is also important. The decision regarding which surgical procedure is done depends on the classification group, including:
- Enucleation: This procedure is done to remove the eyeball and a portion of the optic nerve.
- Eye Implant and Artificial Eye Placement: Following an enucleation, an ocular implant is placed and attached to the muscles responsible for eye movement. In a separate surgery completed 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 appearance 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:
- Extrusion of the implant (the implant comes out).
- Loss of vision.
Some people are at a higher risk for developing surgical complications. Speak with your healthcare team if you have concerns regarding surgical risks and/or to discuss additional risks based on your personal situation.
What is recovery like?
The healthcare team will discuss with you the need, if any, to remain in the hospital following your surgery. While most surgeries are done as an out-patient, at times a short hospital stay is recommended. For 24 to 36 hours following surgery, you may experience a headache, which may be relieved with over-the-counter medications that care team can recommend.
You will be instructed on the care of the bandage, which should remain in place for 5 days, unless instructed otherwise. The healthcare team will discuss with you the need to take certain medications, which may include a topical antibiotic and steroid.
Common activity restrictions and postoperative instructions include:
- Cleanse the outside of the eyelid gently with a clean, warm and soapy wash cloth.
- Avoid lifting anything heavier than 10 lb, straining or rubbing the eye for at least 2 weeks following surgery.
- Avoid eyelid crust formation.
- Avoid running the shower on the surgical eye for approximately 10 days after surgery.
- Return to work/school as advised by your healthcare team, which is typically within 2-6 weeks following surgery.
- Follow your healthcare teams advice on taking aspirin or blood thinners.
Note: It is normal to experience blood tinged tears. Speak with your healthcare team with any concerns.
How can I care for myself?
You may need a family member or friend to help you with your daily tasks until you are feeling better. It may take some time before your team tells you that it is ok to go back to your normal activity.
Be sure to take your prescribed medications as directed to prevent pain, infection and/or constipation. Call your team with any new or worsening symptoms.
There are ways to manage constipation after your surgery. You can change your diet, drink more fluids, and take over-the-counter medications. Talk with your care team before taking any medications for constipation.
Taking deep breaths and resting can help manage pain, keep your lungs healthy after anesthesia, and promote good drainage of lymphatic fluid. Try to do deep breathing and relaxation exercises a few times a day in the first week, or when you notice you 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.