Extragonadal germ cell tumors develop from germ cells (fetal cells that give rise to sperm and eggs). Extragonadal germ cell tumors form outside the gonads (testicles and ovaries). Explore the links on this page to learn more about extragonadal germ cell tumors, how they are treated, and clinical trials that are available.

Extragonadal Germ Cell Tumors Treatment

  • Extragonadal germ cell tumors form from developing sperm or egg cells that travel from the gonads to other parts of the body.
  • Age and gender can affect the risk of extragonadal germ cell tumors.
  • Signs and symptoms of extragonadal germ cell tumors include breathing problems and chest pain.
  • Imaging and blood tests are used to detect (find) and diagnose extragonadal germ cell tumors.
  • Certain factors affect prognosis (chance of recovery) and treatment option

Extragonadal germ cell tumors form from developing sperm or egg cells that travel from the gonads to other parts of the body.

“Extragonadal” means outside of the gonads (sex organs). When cells that are meant to form sperm in the testicles or eggs in the ovaries travel to other parts of the body, they may grow into extragonadal germ cell tumors. These tumors may begin to grow anywhere in the body but usually begin in organs such as the pineal gland in the brain, in the mediastinum (area between the lungs), or in the retroperitoneum (the back wall of the abdomen).

Extragonadal germ cell tumors can be benign (noncancer) or malignant (cancer). Benign extragonadal germ cell tumors are called benign teratomas. These are more common than malignant extragonadal germ cell tumors and often are very large.

Malignant extragonadal germ cell tumors are divided into two types, nonseminoma and seminoma. Nonseminomas tend to grow and spread more quickly than seminomas. They usually are large and cause signs and symptoms. If untreated, malignant extragonadal germ cell tumors may spread to the lungs, lymph nodes, bones, liver, or other parts of the body.

For information about germ cell tumors in the ovaries and testicles, see the following PDQ summaries:

  • Ovarian Germ Cell Tumors Treatment
  • Testicular Cancer Treatment

Age and gender can affect the risk of extragonadal germ cell tumors.

Anything that increases your chance of getting a disease is called a risk factor. Having a risk factor does not mean that you will get cancer; not having risk factors doesn’t mean that you will not get cancer. Talk with your doctor if you think you may be at risk. Risk factors for malignant extragonadal germ cell tumors include the following:

  • Being male.
  • Being age 20 or older.
  • Having Klinefelter syndrome.

Signs and symptoms of extragonadal germ cell tumors include breathing problems and chest pain.

Malignant extragonadal germ cell tumors may cause signs and symptoms as they grow into nearby areas. Other conditions may cause the same signs and symptoms. Check with your doctor if you have any of the following:

  • Chest pain.
  • Breathing problems.
  • Cough.
  • Fever.
  • Headache.
  • Change in bowel habits.
  • Feeling very tired.
  • Trouble walking.
  • Trouble in seeing or moving the eyes.

Treatment Clinical Trials for Extragonadal Germ Cell Tumor

Clinical trials are research studies that involve people. The clinical trials on this list are for extragonadal germ cell tumor treatment. All trials on the list are supported by NCI.

NCI’s basic information about clinical trials explains the types and phases of trials and how they are carried out. Clinical trials look at new ways to prevent, detect, or treat disease. You may want to think about taking part in a clinical trial. Talk to your doctor for help in deciding if one is right for you.

Certain factors affect prognosis (chance of recovery) and treatment options.

The prognosis (chance of recovery) and treatment options depend on the following:

  • Whether the tumor is nonseminoma or seminoma.
  • The size of the tumor and where it is in the body.
  • The blood levels of AFP, β-hCG, and LDH.
  • Whether the tumor has spread to other parts of the body.
  • The way the tumor responds to initial treatment.
  • Whether the tumor has just been diagnosed or has recurred (come back).

Stages of Extragonadal Germ Cell Tumors

  • After an extragonadal germ cell tumor has been diagnosed, tests are done to find out if cancer cells have spread to other parts of the body.
  • There are three ways that cancer spreads in the body.
  • Cancer may spread from where it began to other parts of the body.
  • The following prognostic groups are used for extragonadal germ cell tumors:
    • Good prognosis
    • Intermediate prognosis
    • Poor prognosis

What is Cancer?

  • Cancer can start almost anywhere in the human body, which is made up of trillions of cells. Normally, human cells grow and divide to form new cells as the body needs them. When cells grow old or become damaged, they die, and new cells take their place.

  • Cancer prevention is action taken to lower the risk of getting cancer. This can include maintaining a healthy lifestyle, avoiding exposure to known cancer-causing substances, and taking medicines or vaccines that can prevent cancer from developing.

  • Cancer can cause many different symptoms. Most often these symptoms are not caused by cancer, but by benign tumors or other problems. If you have symptoms that last for a couple of weeks, your doctor will do a physical exam and order tests or other procedures to find out what is causing your symptoms.