There are two forms of retinoblastoma, the hereditary form that usually occurs in two eyes and the non-hereditary form that always occurs in an eye. In the hereditary form, children of the patient have a 50% chance of also getting retinoblastoma. At a later age patients with the hereditary form also have a chance of another form of cancer in the bones, soft tissues or skin.
Retinoblastoma is usually noticed by a white pupil (cat’s eye) , when the white tumor in the retina is visible. In the multidisciplinary retinoblastoma team of the Amsterdam University Medical Centers, all Dutch retinoblastoma patients are diagnosed, treated and followed up; this is combined with scientific research.
The diagnosis is made by the ophthalmologist by the eye examination under anesthesia combined with ultrasound. An MRI is used to determine whether the tumor is limited to the eye or has already grown outwards. There are different treatment options depending on the size of the tumor and precise localization in the eye/eyes.
The main goal is to save life, vision and the eyeball with the best possible quality of life and as few late effects of treatment as possible. The different treatment options are removal of the eye, chemotherapy, radiation, laser therapy or freezing of the tumor.
Working together on a rare tumor is extra important. We are currently setting up a big international study. We want to determine by the diagnosis and follow-up of patients with the use of biomarkers where the tumor is located, whether it is active and which genetic abnormalities occur. This allows us to make the best choices for (additional) treatment and the best future of our patients.