Germ Cell Tumors

Learn About Our Program

Schedule an Appointment

What are germ cell tumors?

Germ cells are the cells that make sperm and eggs. They are part of the reproductive system. If germ cells start to grow out of control, they can form germ cell . Doctors do not know what causes this.

Germ cell tumors can be cancerous (malignant) or not cancerous (benign).

Even benign germ cell tumors can cause health problems. They may be large and press on other parts of the body. They need treatment.

Types of germ cell tumors
In many cases, childhood germ cell tumors form in the or (called gonadal). But germ cell tumors can happen anywhere in the body (called extragonadal). They may form in:
- The lower part of the spine
- The belly
- The brain
- The chest, between the lungs

Cancer and Blood Disorder Care at Seattle Children's

Our team treats babies, children, teens and young adults, including those with the hardest-to-treat cancers and blood disorders. We provide treatment options that many centers do not offer.

What are the symptoms of germ cell tumors?

Symptoms of germ cell tumors depend on the size and location of the tumor.

Some of these same symptoms can be caused by problems that are not tumors and are not cancer. Check with a doctor about:

Coughing or trouble breathing or getting enough air. These could be symptoms of a tumor in the chest or lungs.
A lump or pain in the belly, unusual increase in waist size or constipation. A tumor in the belly or ovaries may cause these symptoms.
A painless lump or swelling in the sac that holds the testicles (scrotum).
Trouble with vision, movement or balance and changes in senses or personality. These could be symptoms of a germ cell tumor in the brain
A lump near the opening at the end of the digestive tract (anus), along with constipation or not being able to pee. A tumor in the bones at the base of the spine may cause these symptoms.
Early puberty. Several types of germ cell tumors may cause this.
Extreme thirst and peeing a lot. Germ cell tumors in the brain may cause these.
Back pain.

How are germ cell tumors diagnosed?

To find out if your child has a germ cell tumor, the doctor will:

Do an exam to look for signs of disease
Ask about current health and past problems
Do tests to learn more

Tests
Common tests to check for germ cell tumors include:
- Blood tests to check the levels of white blood cells, red blood cells, hormones and certain chemicals. Tests also look for tumor markers – substances made by the tumor that go into the bloodstream.
- Biopsy to take out a sample of tissue. Doctors check it for cancer and look at the type of cells.
- Lumbar puncture, if a tumor is suspected in the brain. Doctors use a needle to remove fluid from the spinal column and check for tumor cells and tumor markers. This is also called a spinal tap.
- Imaging studies to take pictures of the inside of the body. These help the doctor see tumors or areas where cancer is active. Imaging studies may include:
  - X-ray
  - Ultrasound
  - CT (computed tomography) scan
  - MRI (magnetic resonance imaging)
- Neurological exam to check strength, balance and senses.
Prenatal diagnosis

A routine ultrasound during pregnancy may show signs of a germ cell tumor before your baby is born. If this happens, the team at Seattle Children’s Fetal Care and Treatment Center can work with you to plan for the treatment your baby will need.

Stages and Risk Levels of Germ Cell Tumors

The stage of a cancerous tumor means how far it has spread and what body parts it affects. The risk level depends on how hard the tumor is to treat and the chance that it will come back after treatment. Knowing the germ cell tumor’s stage and risk level helps your doctor plan the right treatment.

Stages
A cancerous germ cell tumor is at 1 of these stages:
- Stage 1: Doctors were able to remove the whole tumor through surgery. Blood tests do not show any more tumor activity.
- Stage 2: After removing the tumor, doctors may see tumor cells in lab tests of tissue. Or blood tests may show high levels of tumor markers.
- Stage 3: After treatment, doctors can see cancer cells on imaging studies. Or the are larger than normal.
- Stage 4: Cancer has spread to other areas of the body, outside the lymph nodes.
Risk levels
Germ cell tumors are grouped by risk: low, standard and high.
- Low-risk tumors are stage 1.
- Tumors are high risk if a person is older than 11 and has either:
  - A stage 4 tumor in any location
  - A tumor outside the ovaries or testicles that is stage 2, 3 or 4
- Other tumors are considered standard risk.

How are germ cell tumors treated?

Our treatment goal is to give your child the best chance of a long and healthy life. U.S. News & World Report consistently ranks our Cancer and Blood Disorders Center among the top pediatric oncology programs in the country. If a tumor affects the reproductive organs, we work to protect the ability to have a baby in the future (fertility preservation).

Our Solid Tumor team will tailor treatment to your child’s unique needs, based on:

Age. Germ cell tumors tend to form differently in young children than in teens or adults.
Overall health.
Where the tumor is.
How the cancer cells look under a microscope.
Your family’s preferences.

Treatment Options

Surgery
- Based on the location of the tumor, doctors will decide to remove either the whole tumor or a small sample of cells to check for cancer (biopsy).
- If doctors do a biopsy, your child may need more surgery to remove the rest of the tumor.
- Often, doctors can remove all or nearly all of a germ cell tumor.
Surgery is done at our hospital campus in Seattle. Learn more about surgery to treat tumors at Seattle Children’s.
Chemotherapy

If the germ cell tumor is cancerous, treatment may include anticancer medicine (chemotherapy).

We give these medicines through a vein (called intravenous or IV). Then the medicine spreads around the body through the bloodstream to kill cancer cells.

Doctors sometimes use chemotherapy before surgery to help shrink the tumor or after surgery to help kill any cancer cells that remain. Some people have only chemotherapy, not surgery.

We provide chemotherapy at our hospital’s main campus in Seattle. Most people we treat for germ cell tumors stay in our Cancer and Blood Disorders Center – Inpatient. Some get treatment at our outpatient infusion center as a day procedure.

See more about getting chemotherapy at Seattle Children’s.
Radiation therapy

Doctors rarely use radiation for germ cell tumors except for tumors in the brain. Read more about brain tumors.

Our help your team decide if radiation may be helpful and what type of radiation to use. They are very experienced caring for children, teens and young adults.

Learn more about Seattle Children's Radiation Therapy Service.

Research and Clinical Trials for Germ Cell Tumors

For some children, teens and young adults with germ cell tumors, the treatment options include taking part in research studies (clinical trials). Your doctor will talk with you about any new treatment options that might help. Then you can decide whether you want to take part.

As national leaders in cancer research, we can offer our patients the very latest treatments being studied. At Seattle Children’s, our current research studies include reprogramming the body’s infection-fighting T cells to find and destroy cancer cells. This phase 1 clinical trial, called STRIvE-01, may be an option for children and young adults with cancerous germ cell tumors that don’t respond to treatment (refractory) or that come back (relapsed).

Our current studies include testing:

Faster cycles of BEP chemotherapy for advanced tumors
Radiation therapy after chemotherapy for newly diagnosed germ cell tumors in the brain and spinal cord
Watchful waiting after surgery compared to chemotherapy for low-risk tumors

You can find clinical trials offered at Seattle Children’s on our Current Research Studies page or on ClinicalTrials.gov.

Read our guide about searching for trials on ClinicalTrials.gov (PDF).
Contact us at 206-987-2106.
Email us at [email protected].
Read more about cancer research and clinical trials at Seattle Children’s.

Follow-up Care for Germ Cell Tumors

Follow-up care is important for 5 years after treatment ends. The follow-up routine will depend on the type of tumor and treatment.

Most people we treat for cancerous tumors visit Seattle Children’s 1 to 4 times each year for follow-up care. If you live far from Seattle, you may get some lab work like blood and urine tests in your own area.

Starting about 2 years after treatment ends, our Cancer Survivor Program provides long-term follow-up care to help young people stay healthy.

During follow-up visits, your doctors will:

Look for any signs that cancer is returning
Check for effects that may happen months or years after treatment
Tell you and your child about any risk for other cancers and signs to watch for

Why choose Seattle Children's for germ cell tumor care?

Seattle Children's has the most experienced pediatric Solid Tumor team in the Pacific Northwest. We offer the most advanced treatments for germ cell tumors in our region and access to studies of the newest options (clinical trials).

The experts you need for comprehensive care

If the tumor is cancerous, a doctor specially trained in diagnosing and treating cancer in children, teens and young adults (pediatric oncologist) will guide your care. U.S. News & World Report (USNWR) ranks Seattle Children's Cancer and Blood Disorders Center among the best in the nation, year after year.

Surgery is one of the main treatments for germ cell tumors. Our surgeons are specially trained to care for young people and are in pediatric surgery. We are developing ways to remove tumors that are less invasive than traditional surgery.

We know that teens and young adults with cancer have different challenges than young children. Our Adolescent and Young Adult Cancer Program focuses on their needs, which may include fertility preservation. We are the only pediatric fertility preservation team in the Pacific Northwest that offers all fertility preservation options available to children, teens and young adults.

You will benefit from the work of physician-scientists at Fred Hutchinson Cancer Center and UW Medicine, as well as at Seattle Children’s. The National Cancer Institute has named our partnership a comprehensive cancer center.

Some parents learn their baby may have a germ cell tumor from a routine ultrasound during pregnancy. Our Fetal Care and Treatment Program can help your family prepare for your baby’s birth and plan the best treatment.

Specialists in caring for children, teens and young adults

Our specialty is treating disease while helping our patients become healthy and productive adults.

Our team cares for your whole child. As needed, they will receive care from specialists in nutrition, pain management, palliative care, pharmacy, physical therapy and emotional health. Read more about the supportive care we offer.

Children, teens and young adults do not react to illness, injury, pain and medicine in the same way as older adults. They need — and deserve — care designed just for them. Our experts focus on how treatments today affect growing bodies in the future. We plan treatment based on years of experience plus the newest research on what works best and is safest.

Support for your whole family

A germ cell tumor diagnosis can be scary. We help your family all along the way.

During visits, we take time to explain this condition. We help you fully understand your treatment options and make the choices that are right for your family.

Our doctors, nurses, child life specialists and social workers help your family through the challenges. We connect you to community resources and support groups.

At Seattle Children's, we work with families from around the Northwest and beyond. Whether you live nearby or far away, we can help with financial counseling, schooling, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.