Germ Cell Tumors

Germ cells develop during pregnancy and grow into the reproductive organs of a fetus. They are present in an embryo (the tiny organism that develops into a fetus). During pregnancy, these cells develop into gonads (ovaries or testes) and descend into the pelvis (ovaries) or scrotum (testicles), where they assume their place in a fully formed fetus.

Sometimes, these cells can develop tumors. While babies with genetic conditions such as extra or missing sex chromosomes or testes that do not descend into the scrotum are more at risk for developing germ cell tumors, there is no clear cause for the condition. The chance of your child developing a germ cell tumor is small. According to the American Cancer Society, roughly four percent of childhood cancers are germ cell tumors.

Germ cell tumors can be benign (noncancerous) or malignant (cancerous). Most germ cell tumors occur in the ovaries or testicles, but they may also be found in other areas of the body, including the head, chest, abdomen, pelvis or lower back area.

Rarely, germ cell tumors can metastasize (spread) to other parts of the body. Common sites for metastasis include the lungs, liver, lymph nodes and central nervous system (brain and spinal cord).

Symptoms of germ cell tumors are different for each child, because tumors can develop in so many areas of the body.

The most common symptoms of germ cell tumors include:

A swelling or mass that your child’s doctor can feel or see
Abdominal pain
Constipation, urinary retention, incontinence and leg weakness caused by a tumor in the sacrum (bottom of the spinal column) pressing against nerves or organs
Development of pubic hair, breast enlargement or vaginal bleeding at a young age
Elevated levels of alpha-fetoprotein (AFP)
Elevated levels of beta-human chorionic gonadotropin (beta-hCG)
Wheezing or shortness of breath caused by a tumor pressing against the lungs

These symptoms can be mistaken for other conditions, so it is important for your child to be seen by a doctor when he or she has unusual symptoms or a growth you can see or feel.

Diagnosis of Germ Cell Tumors

The doctor will review your child's complete medical history and perform a physical exam. If a germ cell tumor is suspected, he or she may order several diagnostic tests to confirm the diagnosis, including:

Computed tomography (CT) scan
Magnetic resonance imaging (MRI)
X-ray
Ultrasound (also called sonography)
Bone scans
Blood tests such as:
- A chemistry panel
- Kidney and liver function tests (to look for elevated enzyme levels that may indicate abnormal function of these organs)
- A complete blood count (CBC) test
- A tumor marker test (looks for chemicals in the blood that may indicate the kind of tumor)
Genetic tests
Biopsy (sample of tissue taken and examined under a microscope)

Treatments

Doctors at Riley at IU Health determine specific treatment for germ cell tumors based on:

The tumor type
The tumor’s location and size
Your child’s age and general health
Your child’s tolerance for treatment
You and your child’s preferences

Treatments include:

Surgery
Chemotherapy
Radiation therapy
Bone marrow transplant
Hormone replacement
Antibiotics (to prevent or treat infections)
Follow-up care (important to detect a recurrence)

Your child’s long-term outlook (prognosis) greatly depends on:

The type of tumor
Size and location of the tumor
Metastasis (spreading of cancerous tumors)
The tumor's response to therapy
The age and overall health of your child
Your child's tolerance of specific medicines, procedures or therapies

Each child’s prognosis is unique to his or her individual situation. Prompt and aggressive treatment based on accurate diagnosis gives your child the best chance to overcome the tumor and any damage it may have caused. There are side effects both during treatment and after completion of therapy that require close monitoring. During treatment, your child is at increased risk for infections or bleeding. Your child’s doctor will discuss specific side effects based on the therapies (chemotherapy or radiation) he or she will receive. The doctor will discuss all these important issues with you before beginning treatment.

Sometimes the tumor may recur (come back), and this can have a significant effect on the outcome as well. Patients whose cancer recurs after receiving chemotherapy can still be cured.

Key Points to Remember

The chance of your child developing a germ cell tumor is small. Germ cell tumors comprise about four percent of all childhood cancers.
Most germ cell tumors occur in the ovaries or testicles but may also be found in areas of the body outside the ovaries and testicles.
Diagnosis includes a physical exam and medical history and may include blood tests, various imaging tests and a biopsy.
Prompt and aggressive treatment based on an accurate diagnosis gives your child the best chance to overcome a germ cell tumor and any damage it may have caused.

Support Services & Resources

Visit the trusted website below to learn more about germ cell tumors, including information about support groups and research.

Riley at IU Health offers a broad range of supportive services to make life better for families who choose us for their children's care.

Learn More About Riley Support Services

National Cancer Institute

The National Cancer Institute is the U.S. federal government’s primary agency dedicated to cancer research and training. Information about various germ cell tumor types can be found on the organization's website.

Germ Cell Tumors Research

Through the Children’s Oncology Group, a nationwide organization, patients at Riley at IU Health can participate in experimental studies that may provide new, more effective treatments for a wide variety of cancers.

The Indiana University Health Melvin and Bren Simon Cancer Center is a national leader in the treatment of germ cell cancers. The Cancer & Blood Diseases Department at Riley at IU Health works closely with the IU Health Melvin and Bren Simon Cancer Center, so your child will receive an expert level of care.

Locations

In addition to our primary hospital location at the Academic Health Center in Indianapolis, IN, we have convenient locations to better serve our communities throughout the state.