Retinoblastoma Patient & Family Handbook

examines the inside of the eye(s) after they are dilated (opened widely) with special eye drops. Retino- blastoma 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. ULTRASOUND This test uses high-frequency sound waves to look at internal body organs or tumors. It is painless and involves no radiation. For retinoblastoma, an ultrasound of the orbits (eyes) may be part of the initial diagnostic evaluation. BONE MARROW TESTS Bone marrow is the blood-producing factory of the body. To determine if retinoblastoma cells have metastasized (spread) to the bone marrow, a bone marrow aspirate and a bone marrow biopsy may be performed. For bone marrow tests, a special needle is inserted into the hip or bone while your child is sedated, a small amount (about 1 teaspoon) of liquid bone marrow (looks like blood) is removed, and then a small piece of the bone marrow (the soft bony portion) is obtained. The bone marrow is viewed under a microscope to determine if any retinoblastoma cells are present. The results usually are available within 2–3 days of the procedures. The most common potential side effect is pain at the procedure site that lasts less than 24 hours. It is rare for a patient with retinoblastoma to have evidence of bone marrow disease unless the disease is very advanced. Not all children with retinoblastoma will need to have a bone marrow test.

LUMBAR PUNCTURE (SPINAL TAP) This test is performed while your child is sedated and usually is done along with the bone marrow tests. While your child is lying on his or her side, a long, thin needle will be inserted a short distance (1–2 inches) into the lower middle portion of his or her back be- tween two vertebrae (bones of the spine). This procedure is done to obtain a small amount of spinal fluid, a clear liquid that is then sent to the pathology lab and examined under a microscope to look for tumor cells. As with the bone marrow, it is rare for a patient with retinoblastoma to have spinal fluid that shows evidence of a tumor, unless the cancer is very advanced. Not all children with retinoblastoma will need to have a spinal tap test.

BONE SCAN A bone scan is done to determine whether retinoblastoma has spread to any of the bones. A small amount of isotope (radioactive dye that makes any areas of tumor in the bone light up on the pictures) is injected into a vein. About 2–3 hours later, scans (pictures) are taken of your child’s entire body. The scanning process is painless; however, young children may need sedation to help them lie still during this scan. It is rare for a patient with retinoblastoma to have tumor metastasize to the bones. Not all children with retinoblastoma will need to have a bone scan. BLOOD TESTS Blood tests are done to monitor your child’s blood cells, body salts, and chemistries. A complete blood count (CBC) is used to look for anemia, which is low hemoglobin (iron-containing blood product). A child who is anemic may appear pale and be more tired than usual. The CBC also will detect changes in

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