n WHAT ARE RARE TUMORS? Rare tumors are defined by the Rare Disease Act of 2002 as affecting fewer than 200,000 individuals in the United States; however, this does not apply to rare pediatric cancers because pediatric cancer is rare itself. In the United States, there are about 15,000 cases of childhood cancer diagnosed each year in patients younger than 20 years old, and rare tumors account for about 9% of these.
Rare tumors are most common in 15- to-19-year-olds. They arise from the epithelial tissue, which is the source of most adult cancers; because rare tumors resemble adult cancers, the treatment of these tumors in children is often the same treatment used for adults.
Information about these particular rare cancers is difficult to find. This handbook is designed to answer some of your questions and concerns. Your treatment team will provide detailed information about your child’s specific type of cancer and treatment. According to the Children’s Oncology Group, the following are considered rare tumors of childhood: • liver tumors • germ cell tumors • thyroid tumors • nasopharyngeal carcinoma • malignant melanoma
• adrenocortical carcinoma • pleuropulmonary blastoma.
n LIVER TUMORS
What Are Liver Tumors? Liver tumors account for about 1% of all childhood cancers, and they can be benign or malignant. The liver is an organ located in the upper right side of the abdomen and protected by the rib cage. The most common malignant tumors are hepatoblastoma and hepatocellular carcinoma (HCC). Hepatoblastoma occurs most frequently in infants or very young children between the ages of 2 months and 3 years. HCC occurs most frequently in children ages 10–16 years. What Are Some of the Signs and Symptoms of Liver Cancer? Liver cancer symptoms are usually caused when the abdomen enlarges because of the tumor growth. This often happens without any other symptoms. Other symptoms that can occur include • loss of appetite • vomiting • weight loss
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