Germ Cell Tumors

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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 tumors. 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 testicles or ovaries (called gonadal). Other germ cell tumors (called extragonadal) 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 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.

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 if your child has any of these:

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. 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). 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.

Diagnosing Germ Cell Tumors

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 your child's 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 your child’s 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 your child’s 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 stage and risk level of your child’s germ cell tumor helps your doctor plan the right treatment.

Stages
Children who have a cancerous germ cell tumor are considered to be at one 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 by checking your child’s body. Or your child’s lymph nodes 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 child 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.

Treating Germ Cell Tumors

Our treatment goal is to give your child or teen the best chance of a long and healthy life. If your child’s tumor affects their reproductive organs, we work to protect their ability to have a baby in the future (fertility preservation).

Your child's doctor and healthcare team will suggest a treatment plan for your child based on:

Your child's age. Germ cell tumors tend to form differently in young children than in teens or adults.
Their 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 a biopsy is performed, 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 your child has a cancerous germ cell tumor, their treatment may include anticancer medicine (chemotherapy).

Children get 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 children have only chemotherapy, not surgery.

Our patients receive chemotherapy at our hospital campus in Seattle. Most children with germ cell tumors stay in our Cancer and Blood Disorders Center - Inpatient during treatment. Some children 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 radiation oncologist, Dr. Ralph Ermoian, is very experienced caring for children. He helps your child’s team decide if radiation may be helpful and what type of radiation to use.

Learn more about Seattle Children's Radiation Therapy Service.
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 child’s doctor will talk with you about any new treatment options that might help your child. Then you can decide whether you want to take part.

Our current studies include testing:
- Faster cycles of BEP chemotherapy for advanced tumors
- High-dose chemotherapy and stem cell transplant compared to standard chemotherapy
- Radiation therapy after chemotherapy for newly diagnosed tumors
- 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.
- Read more about cancer research and clinical trials at Seattle Children’s.

Follow-up care

Follow-up care is important for 5 years after treatment ends — no matter what type of treatment your child had. The follow-up routine will depend on your child’s tumor and treatment.

Most children treated for cancerous tumors visit Seattle Children’s 1 to 4 times each year for follow-up care. If you live far from Seattle, your child may get some of their lab work 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

Germ Cell Tumors at Seattle Children’s

Our Solid Tumor Program team has cared for many children with germ cell tumors. Our experienced experts will diagnose your child and recommend the right treatment.

If you would like an appointment, ask your primary care provider to refer you to our Cancer and Blood Disorders Center.

If you have a referral or would like a second opinion, contact the center at 206-987-2106.

Providers, see how to refer a patient.

The experts you need for comprehensive care

If your child’s tumor is cancerous, a doctor specially trained in diagnosing and treating cancer in children (pediatric oncologist) will guide your child’s care.

Surgery is one of the main treatments for germ cell tumors. Our surgeons are specially trained to care for kids and are board certified 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.

Your child 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 Center can help your family prepare for your baby’s birth and plan the best treatment.
Specialists in caring for children and teens

Our specialty is treating children’s disease while helping them grow up to be healthy and productive adults.

Our team cares for your whole child. We don’t just treat their disease. As needed, your child 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 don’t react to illness, injury, pain and medicine in the same way as 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 your child’s treatment based on years of experience plus the newest research on what works best — and most safely — for children.
Support for your whole family

Learning that your child has a germ cell tumor can be scary. We help your family all along the way.

During visits, we take time to explain your child’s 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 child and your family through the challenges of their illness. We connect you to community resources and support groups.

At Seattle Children's, we work with many children and 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.
The most advanced therapies and clinical trials

We offer the most advanced treatment options for germ cell tumors in our region, including anticancer medicine (chemotherapy), surgery and radiation therapy.

As national leaders in cancer research, we can offer our patients the very latest treatments being studied. These research studies are called clinical trials or therapeutic trials. The newest options, such as phase 1 clinical trials, may be especially important if your child has a cancerous tumor that comes back after treatment.

Researchers are studying new approaches to see if they work better than standard treatment. These include changing the timing of chemotherapy and using combinations of different therapies.

Search for “germ cell tumors” to find these clinical trials on our Current Research Studies page.