Children do not die from retinoblastoma contained in the eye.
With early diagnosis, specialist referral, appropriate treatment in the hands of experienced doctors, and careful follow-up for both eyes, intraocular retinoblastoma has an excellent chance of cure.
Extraocular and trilateral retinoblastoma are difficult to treat with a much poorer prognosis.
More than 96% of children treated in developed countries are cured today. This is one of the highest cure rates, and best success stories of all childhood cancers.
However, many children have one or both eyes surgically removed to save their life. Most children whose eyes are saved have severe, irreversible vision loss.
Without early diagnosis and treatment, retinoblastoma quickly spreads beyond the eye to the brain or bone marrow.
Untreated retinoblastoma is fatal, and cancer that has spread to the brain or bone marrow has a very poor chance of cure, even with the most sophisticated treatment.
Trilateral retinoblastoma is very difficult to treat, and most children die within 12-18 months of diagnosis. Pineal tumours have a better chance of cure than suprasellar and parasellar tumours.
A slowly growing number of children are surviving, inspiring hope for future children diagnosed with this pernicious form of retinoblastoma.
Globally, only about 8% of children with retinoblastoma can access essential treatment. More than 80% of children (about 7,000 each year) die due to lack of appropriate and timely medical care.