When treatment for retinoblastoma occurs, there are two main goals:  to prevent the return of the cancer and to preserve vision.  Several types of therapies are used for retinoblastoma, and most children can be cured.

Chemotherapy can be used to shrink tumors in the eye.  This approach is often used in children with bilateral disease (both eyes), in hopes of preserving vision in at least one eye.  The use of chemotherapy often makes it possible to completely eliminate smaller tumors, in combination with other measures such as:

• Photocoagulation - using laser light to destroy blood vessels that supply nutrients to the tumor
• Thermotherapy - using heat to destroy cancer cells
• Cryotherapy - using extreme cold to destroy cancer cells
• Radioactive (iodine) plaque - placing a radioactive patch in the retina; the patch is removed after the tumor has received a specific dose of radiation

Chemotherapy is also used after surgical removal of the eye (see below) when the tumor has advanced into the deep layers of the eye or into the optic nerve, and when the retinoblastoma has spread outside of the eye.

Radiation Therapy uses x-rays or other high-energy particles to destroy cancer cells and shrink tumors.  Depending upon the dose, radiation can interfere with normal growth, including growth of the bones around the eye (orbit).  The use of radiation can also increase the risk of tumors later in life for children with the genetic form of retinoblastoma.  Sometimes retinoblastoma tumors are treated with radiation by placing a radioactive plaque outside the eye, immediately behind where the tumor is, for several hours so that a given dose of radiation can be administered locally.

Surgery to remove the eye is known as enucleation.  This is the treatment most often used when:

• The ocular oncologist determines that there is no hope of saving vision in the eye.
• The tumor does not respond to treatment.
• There is permanent damage to the retina.

The Surgery

• Enucleation is a surgical procedure usually performed under general anesthesia.  It generally takes about one hour and most children are discharged to home the same day.
• After the eyeball is removed, a device called an orbital implant is inserted into the socket.  Then, a thin plastic plate called a temporary conformer is inserted.  The conformer helps to maintain the shape of the eye and avoids a shrunken appearance.  The eye is then covered with a special patch for 12 hours to help decrease swelling.
• The child may experience pain or discomfort for a short time following the enucleation, but this is usually controlled with pain medication.

The Prosthesis

• About 6 weeks after surgery, the orbit will be healed and an artificial eye can be fitted.  This eye, called an ocular prosthesis, is made of plastic and is molded to fit the inside of the eyelid.  The color and appearance are made to match the other eye, so that it looks natural.  The prosthesis is important because in addition to the cosmetic benefits, it allows the eyelid to open and close normally.
• Often, the child will experience some tearing and mucous build-up with the prosthesis.  The build-up is easily cleaned with water.  It is recommended that the prosthesis be removed and cleaned thoroughly about every 3 months.  A new prosthesis will be needed periodically until the child’s facial bones are fully grown.

Research Studies

The majority of children with cancer participate in research studies.  This high rate of participation has been essential to improving the cure rates for children’s cancer.

Researchers design various studies to improve treatment and advance the understanding of cancer and its causes.  Clinical trials are carefully reviewed and must be approved through a formal scientific process before anyone can be enrolled.  If there is a research study “open” that your child is “eligible for,” you may be asked to allow your child to participate.  It is also possible that your child will be asked to participate in more than one study.

Whether an individual is eligible for a particular study may depend on age, location of the cancer, the extent of the disease and other information.  Researchers usually must limit their study to some of these characteristics to have a scientifically valid study.  Further, researchers must follow exactly the same restrictions throughout the study.

If your child is eligible to participate in one or more study, your doctor will discuss these with you during an initial treatment conference (also called  informed consent conference).  The doctor will describe the study, potential risks of participation, and other information you need to decide whether or not you would like your child to participate in the study.  You always have the choice to participate or not in research studies.

If you do choose to have your child participate in a study, you doctor will explain what type of information you will receive about the results of the study.  The overall results of the research study will be published to inform the public and other researchers.  No study will publish any information that identifies an individual.

Visit the Clinical Trials section of this website to learn more about the various kinds of research studies.

 

Last updated September, 2011

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