Germ Cell Tumors Patient & Family Handbook

WHAT IS A GERM CELL TUMOR? A germ cell tumor is an abnormal growth that comes from the cells of a developing ovary or testicle. Germ cell tumors can be malignant (cancerous) or benign (noncancerous) and are made up of cells that make sperm and eggs (germ cells). Germ cells make up part of the reproductive system and start growing before the baby is born. Germ cells travel toward the site where the child’s testicles or ovaries will grow, such as into the scrotal sac as testicular cells and into the pelvis as ovarian cells. Most often, germ cell tumors develop in the ovary or testicle, which are also called the gonads. The most common spot for germ cell tumors to occur outside of the ovary or testicle is in the sacrococcygeal region (pelvic area and tailbone), brain, abdomen (belly), neck, or chest. When germ cell tumors form outside of the gonads, they are called extragonadal. WHAT ARE SOME OF THE SYMPTOMS OF A GERM CELL TUMOR? The symptoms of a germ cell tumor depend upon its size and location. For example, if the tumor is found in the abdomen, the child’s belly may appear bloated. If the tumor is in the testicle, the scrotum may be swollen, and the testicle may be enlarged or uneven in size. If the tumor is in the ovary, there may be pain, soreness, and fullness of the belly. A tumor in the pelvic area may cause constipation (irregularity or difficulty passing stool), trouble with urination (peeing), or fullness of the belly. If the tumor is in the sacrococcygeal area, there may be a problem with urination, and constipation and leg weakness may occur. A tumor in the chest may cause coughing, trouble breathing, or chest pain. A tumor in the brain may cause changes in eyesight or speech; weakness; extreme thirst; loss of appetite; growth problems; or early signs of puberty, such as breast development in young girls, voice deepening in young boys, or armpit or pubic hair growth in any young child. WHAT CAUSES GERM CELL TUMORS? There is no answer at this time as to what causes germ cell tumors. It is important to understand that germ cell tumors are not contagious, and they have nothing to do with germs that cause infections. Germ cell tumors are not caused by anything anyone did, including during pregnancy with the child. It also is important to understand that germ cell tumors are not caused by anything the child ate or did not eat (such as vegetables or vitamins). WHO GETS GERM CELL TUMORS? Germ cell tumors are a relatively rare type of tumor in childhood. Close to half of all childhood germ cell tumors are cancerous. Only 2–3 out of every 1 million children will be diagnosed with a germ cell tumor each year. Germ cell tumors are most likely to occur in very young children (infants and toddlers) and in teens, but they can occur in children of any age. Boys with an undescended testicle (even if it has been surgically fixed) are at an increased risk of developing a germ cell tumor of the testicle. ARE GERM CELL TUMORS INHERITED? It does not appear that germ cell tumors are genetic (inherited from a parent). It is very rare to have more than one person in a family with a germ cell tumor.

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