Retinoblastoma Patient & Family Handbook

CT SCAN A CT (computerized or computed tomography) scan is a computer-assisted X ray that creates detailed pictures of internal organs and tumors. It used to be called a CAT (computerized axial tomography) scan. The CT machine is a doughnut-shaped X-ray camera that moves around a table that the patient lies on. Every second, the camera moves a very small distance around the patient while taking an X ray. A computer puts these X rays together to help the doctors see a cross-sectional, 3-D image from all angles. CT scans are very helpful in diagnosing and following the stage and location of cancer. CT scans are very useful in diagnosing tumors, infections, blood clots, and areas of abnormal bleeding. Some tumors are regularly checked by CT scan during and after treatment to see how effective the treatment has been and if a relapse has occurred. CT scans are painless, but the patient must lie still during the scan. Some children require sedation to help them lie still. If your child’s belly is being scanned, they may be asked to drink a dye that allows organs to be seen more clearly. Some patients may be given a small amount of dye through an intravenous (IV) line, which puts the dye right into their veins. The dye can cause a warm, flushing feeling. Generally, there are no side effects from either type of dye; however, allergic reactions are possible. Because there is some radiation exposure with this test, your child’s healthcare team will try to minimize how often it is done. EYE EXAM UNDER ANESTHESIA (EUA) Retinoblastoma is unlike other tumors because a biopsy of the tumor cannot be obtained by surgically removing a piece of it from the eye for examination. Instead, a thorough eye exam under anesthesia (EUA) is performed. During EUA, your child is put into a deep sleep, and the ophthalmologist (eye doctor) examines the inside of the eye(s) after they are dilated (opened widely) with special eye drops. Retinoblastoma can be diagnosed based on how the tumor(s) look inside the eye. The stage of retinoblastoma is based on the number, size, and location of the tumor(s) that are seen by the ophthalmologist during the EUA. The type and intensity of treatment is based on the stage of the disease. Repeat EUAs will be performed treatment to evaluate the response to therapy, and after treatment to monitor your child’s health.