Rare Tumors Patient & Family Handbook

• stomach pain • jaundice (a rare symptom that causes yellow discoloration of the skin and whites of the eyes) • unequal growth of one part of the body compared with the other (e.g., one leg larger than the other) • early signs of puberty. What Causes Liver Cancer? The cause of liver cancer is unclear, but it is believed to develop when the liver cells grow out of control. Mistakes (mutations) may occur during growth of the liver cells, which may cause the uncontrolled growth. Alpha- fetoprotein (AFP), a protein made by growing liver cells, is often elevated (high) in children with liver tumors.

What is the Common Treatment and Outcome for Liver Cancer? Factors that affect treatment and cure are • Complete tumor removal—A child whose tumor can be completely removed by surgery is most likely to be cured. Chemotherapy can be given to shrink large tumors and improve the chances of completely removing the tumor by surgery later. • Presence of pure fetal histology—After a biopsy (surgery to remove a tumor), a pathologist will examine the tumor. If the tumor is similar to fetal liver cells (also known as pure fetal histology), there is an excellent cure rate. • Tumor stage—The earlier stages (I or II) are more easily cured. However, 70% of liver tumors are in the later stages (III or IV) when diagnosed.

• AFP production—Most liver tumors produce AFP. Children with a high rate of AFP at diagnosis who experience a rapid decrease in AFP after starting chemotherapy have a favorable cure rate. Those who have a normal or only slightly elevated AFP may require different treatment.

n GERM CELL TUMORS

What are Germ Cell Tumors? Germ cell tumors are growths that arise in young children and teens, as well as adults. They are rare and account for about 3% of all childhood cancers. The term germ cell refers to “giving of life” because germ cells are the specialized cells that give rise to new life: sperm and egg cells, the sex cells that are needed for human reproduction. Germ cell tumors often occur in the sex organs, but they can appear in several different places in the body such as the

• testes (boys) • ovaries (girls) • abdomen and pelvis • mediastinum (the part of the chest between the breastplate and spinal column) • brain.

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