Wilms Tumor Patient & Family Handbook

n WHAT IS WILMS TUMOR? Wilms tumor is a cancer that develops from kidney cells. It is the most common childhood cancer of the kidneys. Wilms tumor can arise anywhere within the kidney. In rare cases, Wilms tumor can occur outside of the kidney. Not all of the kidney tumors found in children are Wilms tumors. Rhabdoid tumors and clear-cell sarcomas of the kidney are occasionally found in children and are more difficult to treat than Wilms tumor.

n WHAT ARE SOME OF THE SIGNS AND SYMPTOMS OF WILMS TUMOR? The most common sign of Wilms tumor is an enlarged or bloated belly in an otherwise healthy-looking child. Usually a caregiver notices the child’s enlarged belly or feels a mass in the belly while bathing or dressing the child. Some other general signs and symptoms are belly pain, tiredness, blood in the urine (usually found only by a urine test), and occasionally fever. One out of every four children diagnosed with Wilms tumor also has high blood pressure.

n WHAT CAUSES WILMS TUMOR? The cause of Wilms tumor isn’t known at this time. We do know that it is not contagious or genetic, so it cannot be passed from person to person. No behaviors or lifestyle habits, including those practiced during pregnancy, have been associated with the development of Wilms tumor. Cancer is not caused by anything the child ate or didn’t eat (such as vegetables or vitamins). n WHO GETS DIAGNOSED WITH WILMS TUMOR? Wilms tumor accounts for 5% of all childhood cancers. Approximately 500 cases of Wilms tumor are diagnosed each year in the United States. It is slightly more common among African-American children and females than among Caucasian children. Most children (78%) diagnosed with Wilms tumor are between 1 and 5 years of age. The most common age at diagnosis is 3–4 years. It is less common in older children and rare in adults. n IS WILMS TUMOR INHERITED? Cancer may be caused by abnormalities in the genes, but only some forms are inherited. Studies have shown that about 2% of all Wilms tumors are inherited (one or more family members with a history of the disease). It appears that children who have the disease in both kidneys and who are younger at the time of diagnosis are more likely to have a genetic predisposition to develop Wilms tumor. The presence of Wilms tumor in other family members or the presence of intellectual disabilities or other birth defects in the child is another indication that the child may be genetically predisposed to developing Wilms tumor. If your child’s doctor suspects that your child has an inherited type of tumor, examination of family members and genetic counseling are available.

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