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Germ cell tumors

A germ cell tumor is a rare form of childhood cancer that is caused by a fault in the development of reproductive cells. In most cases the tumor is in the genitals, in babies often at the bottom of the spine. In the Netherlands, approximately 12 to 15 children are diagnosed with a germ cell tumor every year.

Germ cells are precursors of eggs or sperm cells. Young germ cells have to travel a long way until they find the ovary or testicle. A fault can occur in the development of those cells. Germ cells can also get stuck along the way, which means that a tumor can also form outside the reproductive organs. This is what we call an extragonadal germ cell tumor.

About half of the germ cell tumors are benign. This is tissue that we normally also have in our bodies, such as hair, bone and teeth. This is called a matured teratoma. Sometimes the tissue is not yet fully ripened. This is called an immature teratoma. The latter form can sometimes still become malignant.

Symptoms of this disease

The complaints depend on the location of the tumor. A tumor at the bottom of the spine can cause swelling. If the tumor grows inward, problems can arise with urination or feces. Your child may also suffer from dysfunction symptoms. A germ cell tumor in the testicle causes few symptoms. However, the child often has a swollen scrotum. In the long run, a tumor in or near the ovary will cause a bulging stomach. If the ovary rotates through the tumor, it is very painful.

In case of a large tumor, the bladder and/or intestines may become trapped. Your child will then have to urinate more often or may experience problems passing feces. If the tumor is in the chest, your child will probably have to cough frequently or will have difficulty breathing. A germ cell tumor in the brain causes quite different symptoms. Depending on the location of the tumor, your child may experience headaches, nausea, or have difficulty seeing or walking. Hormonal disorders also occur. Examples includes obesity, a slowdown in growth or premature puberty.


How do we make the diagnosis?

In order to make a correct diagnosis, we perform an ultrasound scan. We also perform an MRI scan and a blood test. We are looking at the substance called alpha fetoprotein (AFP). Malignant germ cell tumors produce this substance. The concentration of other substances will also be investigated. We perform a CT scan of the lungs if a malignant germ cell tumor is found. In order to be certain about the diagnosis, we also perform a biopsy. This is a piece of tissue that we examine.

Treatment of a germ cell tumor

The treatment is invasive for most children. The precise treatment needed depends on the type, size, location and extent of the tumor. An operation is often sufficient, followed by a period of checks. Sometimes additional chemotherapy and/or radiation are needed.