What are germ cell tumors in children?

Germ cells form the eggs (ova) in females and the sperm in males. Germ cell tumors are made up of these underdeveloped cells. Germ cell tumors are rare. They may be cancer (malignant) or not cancer (benign).

Germ cell tumors may grow in these parts of the body:

• In the ovaries or testicles. Most of these tumors start in the ovaries or testicles (testes). These are called gonadal tumors. 
• Outside the ovaries or testicles. These tumors are called extragonadal. They may start in areas such as the:
  • Brain (cranial)
  • Area between the lungs (mediastinal)
  • Back of the belly (abdomen) (retroperitoneal)
  • Lower spine (sacrum, coccyx) 

The tumors come in different types.

Germinoma

This is a slow-growing germ cell tumor. It is cancer (malignant). The tumor is called dysgerminoma when it grows in the ovaries. It’s called a seminoma when it grows in the testicles.

Nongerminoma (nonseminoma)

This type of tumor grows more quickly. It has several different types:

• Endodermal sinus tumor (yolk sac tumor). This is a germ cell tumor that is most often malignant, but may also be benign. This tumor most often affects the ovaries or testes, and the lower spine. They are often malignant and grow fast. 
• Choriocarcinoma. This kind of tumor is very rare. It is often malignant. It starts from a layer of the placenta. During pregnancy it may spread (metastasize) to the baby and mother. This is called gestational choriocarcinoma. It most often occurs in young pregnant women. A young child can grow choriocarcinoma from chorion cells that are still in the body. This is called nongestational choriocarcinoma.
• Embryonal carcinoma. This type of tumor is usually malignant. It can spread quickly. It is often in the testes.
• Teratoma. This tumor contains several types of tissue. It can be malignant or benign. It’s the most common germ cell tumor in the ovaries.

Mixed

Many germ cell tumors have more than one type of cell. These tumors are treated based on the cell type that is most common.

What causes germ cell tumors in a child?

The cause of germ cell tumors isn't fully known. Some gene defects passed on from parents to children (inherited) may increase the risk for germ cell tumors. Some genetic syndromes can cause abnormal growth of the male and female reproductive systems. Boys born with undescended testicles (cryptorchidism) are believed to have a higher risk of germ cell tumors in the testicles.

What are the symptoms of germ cell tumors in a child?

Symptoms can vary depending on the size and location of the tumor. Symptoms can occur a bit differently in each child. They can include:

• A lump or mass
• Belly (abdominal) pain
• Chest pain
• Trouble breathing
• Trouble with eyesight
• Fever
• Pain in the lower spine
• Need to urinate often or trouble urinating
• Trouble with bowel movements (constipation)
• Increased thirst and urination
• Increased hair growth 
• Vaginal bleeding
• No menstrual period
• Early puberty
• Abnormal shape or size of testicles

The symptoms of germ cell tumors can be like other health conditions. Make sure your child sees a healthcare provider for a diagnosis.

How are germ cell tumors diagnosed in a child?

The healthcare provider will ask questions about your child's medical history and current symptoms. He or she will examine your child, paying close attention to areas with lumps, pain, or other symptoms. Your child may need to see a cancer specialist (pediatric oncologist). Your child may have tests such as:

• Blood tests. These tests check for signs of disease, look at liver and kidney functions, and look for tumor cell markers. Certain genes may also be checked for problems.
• Biopsy. A sample of tissue is removed from the tumor and checked with a microscope for cancer cells. This can be done during surgery or by using a needle. A biopsy is the only way to know for sure if the tumor is cancer.
• CT scan. A series of X-rays and a computer are used to make images of the body. 
• MRI. Large magnets, radio waves, and a computer are used to make detailed images of the inside of the body.
• X-ray. A small amount of radiation is used to make images of internal tissues, bones, and organs.
• Ultrasound (sonography). Sound waves and a computer are used to create images of blood vessels, tissues, and organs. 
• Bone scan. A small amount of dye is injected into a vein. The whole body is scanned. The dye shows areas where there may be tumors.
• Positron emission tomography (PET) scan. For this test, a radioactive sugar is injected into the bloodstream. Cancer cells use more sugar than normal cells, so the sugar will collect in cancer cells. A special camera is used to see where the radioactive sugar is in the body. A PET scan can sometimes spot cancer cells in different areas of the body, even when they can’t be seen by other tests. This test is often used in combination with a CT scan. This is called a PET/CT scan.

After a diagnosis of germ cell tumor, your child will have other tests. These help healthcare providers learn more about the tumor. They will show how much and how far the cancer has spread (metastasized) in your child's body. A stage grouping is then assigned. In some cases, a stage grouping isn't assigned until after surgery is done to remove the tumor.

Stage groupings can have a value of 1 to 4. They are written as Roman numerals I, II, III, and IV. The higher the number, the more advanced the tumor is. Letters and numbers can be used after the Roman numeral to give more details.

The stage of a cancer is one of the most important things to know when deciding how to treat the cancer. Be sure to ask your child's healthcare provider to explain the stage of your child's cancer to you in a way you can understand.

How are germ cell tumors treated in a child?

Your child may be treated by several types of healthcare providers. This depends on factors such as the type and location of the germ cell tumor. The cancer may be treated with any of the below:

• Surgery. This may be done to cut out the tumor (resection) and nearby tissue. The organ where the tumor is growing may also be removed. For example, this may be an ovary or testicle.
• Chemotherapy. These are medicines that kill cancer cells. They may be given by mouth, through a vein (IV), or with other methods.
• Radiation therapy. These are high-energy X-rays or other types of radiation. Radiation is used to kill cancer cells or stop them from growing. Radiation may be used to treat germ cell tumors in the brain.
• High-dose chemotherapy with a stem cell transplant. Young blood cells (stem cells) are taken from the child or from someone else. This is followed by a large amount of chemotherapy medicine. This causes damage to the bone marrow. After the chemotherapy, the stem cells are replaced.
• Clinical trials. Ask your child's healthcare provider if there are any treatments being tested that may work well for your child. 
• Supportive care. Treatment can cause side effects. Medicines and other treatments can be used for pain, fever, infection, and nausea and vomiting.

With any cancer, how well a child is expected to recover (prognosis) varies. Keep in mind:

• Getting medical treatment right away is important for the best prognosis. Cancer that has spread is harder to treat.
• Ongoing follow-up care during and after treatment is needed.
• New treatments are being tested to improve outcome and to lessen side effects.

What are possible complications of germ cell tumors in a child?

A child may have complications from the tumor or from treatment. They may include:

• Damage to the brain or nervous system that causes problems with coordination, muscle strength, speech, or eyesight
• Problems after surgery, such as infection, bleeding, and problems with general anesthesia
• Infection and bleeding from chemotherapy
• Delayed growth and development
• Learning problems
• Problems with reproduction (infertility)
• Return of the cancer
• Growth of other cancers

How can I help my child live with a germ cell tumor?

A child with a germ cell tumor needs ongoing care. Your child will be seen by oncologists and other healthcare providers to treat any late effects of treatment and to watch for signs or symptoms of the tumor returning. Your child will be checked with imaging tests and other tests. And your child may see other healthcare providers for problems from the tumor or from treatment.

You can help your child manage his or her treatment in many ways. For example:

• Your child may have trouble eating. A dietitian may be able to help.
• Your child may be very tired. He or she will need to balance rest and activity. Encourage your child to get some exercise. This is good for overall health. And it may help to lessen tiredness.
• Get emotional support for your child. Find a counselor or child support group can help.
• Make sure your child attends all follow-up appointments.

When should I call my child’s healthcare provider?

Call the healthcare provider if your child has:

• Symptoms that get worse
• New symptoms
• Side effects from treatment

Key points about germ cell tumors in children

• Germ cell tumors may be cancer (malignant) or not cancer (benign). 
• The tumors usually affect the ovaries or testicles. They may also affect the brain, mediastinum, retroperitoneum, sacrum, or coccyx.
• Symptoms vary depending on the size and location of the tumor. There may a lump, pain, or other symptoms.
• Germ cell tumors are diagnosed with blood tests, biopsy, and imaging tests.
• Treatment may include surgery, chemotherapy, and radiation.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.
• Before your visit, write down questions you want answered.
• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.
• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.
• Ask if your child’s condition can be treated in other ways.
• Know why a test or procedure is recommended and what the results could mean.
• Know what to expect if your child does not take the medicine or have the test or procedure.
• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
• Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.