1. What is rb? Retinoblastoma (reh-tin-oh-blast-oma) is a childhood eye cancer arising from immature retinal cells in one or both eyes. The tumor can develop in the human fetus, newborns, infants, or young children.
2. How is rb found? It causes a yellow-white glow in the pupil or a crossed eye.
3. What does the white pupil indicate? This is called leukocoria and it is actually the tumor that is visualized inside the eye through the pupil.
4. Why does the eye drift? Rb can decrease vision and this will cause the eye to drift or become “lazy”.
5. Can rb cause pain? No, rb is usually painless, but some patients with glaucoma develop pain.
6. What causes rb? It is caused by a mutation in chromosome
7. Who is at risk for rb? Those with a known family history of rb are at risk to have children with rb. However, most new cases of rb have no family history.
8. Is rb hereditary? It can be, especially if the child has bilateral rb.
9. Can something in pregnancy cause rb? No, there are no known pregnancy-related causes for rb.
10. Is there something in the environment that causes rb? No, there are no known environmental causes for rb.
11. Can rb be detected with amniocentesis? Sometimes, but the genetic mutation is not always visible.
12. If a child has rb in one eye, can it develop in the other eye? Yes, if there is a family history of rb or if the rb in the one eye is multiple.
13. What are the side effects of treatment? This depends on the treatment. Some children have hair loss with chemotherapy, others have redness around the eyes with radiation, and others have eye swelling with cryotherapy.
14. Do I need to see a pediatric oncologist instead of my regular pediatrician? It is important to follow with both physicians.
15. How can we afford the treatment? Most insurances cover the costs of treatment. There are additional sources listed in this brochure. Any suggestions or additions you may find would be greatly appreciated!
16. Can this cancer spread to other parts of the body? Possibly it can spread to the brain and rest of the body, but this happens only in advanced rb.
17. What might the vision be? The vision depends on many factors, but most children can see enough to walk and play without great difficulty. But remember, the goals of treatment are to first save the child’s life, then save the eye and vision.
18. Will my child have delayed development? Some children with hereditary retinoblastoma are delayed in walking, speech and other facets of development. However, most children are not delayed.
19. Will my child be socially withdrawn? No, most children adapt well to the diagnosis and the visual handicap, especially with family support and education. 20. Why must rb children wear protective glasses? Eye protection at all times is advised for all children with rb to shield the eye(s) from injury, especially during sports. This is particularly important for children with one remaining eye.
21. Can a child with rb attend a regular school? Yes, but if both eyes are affected and the vision is reduced, the child might need a visual assistant during school. Public schools provide this service for visually handicapped children, but it is important to ask your school system about this in advance.
22. Can an eye transplant be done after the eye is removed? No, transplant of the whole eye is not currently possible.
23. Is there research for rb? Yes, much research is being conducted worldwide for rb. Philadelphia is a major center for rb research. Newer and better ways to detect and treat rb are being investigated. Studies into the gene that causes rb are underway.
(Source: Ocular Oncology Service at Wills Eye Institute, Philadelphia)
24. What glossary definitions help with understanding retinoblastoma?
autosomal ; autosomal dominant ; bilateral ; cancer ; cell ; cell division ; chromosome ; deletion ; egg ;family history ; gene ; genetic testing ; glioma ; inheritance ; melanoma ; mutation ; new mutation ;osteosarcoma ; pineal ; pineal gland ; pinealoma ; protein ; pupil ; reflex ; reproductive cells ; retina ;sign ; soft tissue ; sperm ; strabismus ; symptom ; tissue ; tumor ; tumor suppressor gene ; unilateral