Germ Cell Tumors

What are germ cell tumors?

Germ cells are the cells that make sperm and eggs. They are part of our 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).

However, even benign germ cell tumors can cause health problems. They may be large and press on other structures. They need treatment.

  • 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 space between the lungs

Germ Cell Tumors at Seattle Children’s

At Seattle Children’s, we have cared for many children with germ cell tumors. Our experience treating this rare condition means we can offer the best treatment for your child.

Children with germ cell tumors receive care through our Cancer and Blood Disorders Center and our Surgery program.

Please contact the cancer center at 206-987-2106 for more information, a second opinion or to make an appointment. We will diagnose your child’s tumor and recommend the right treatment, whether or not their tumor is cancerous.

  • 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 have published more results in the medical literature on using minimally invasive surgery than most other children’s hospitals.

    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. At Seattle Children’s Cancer Center, our outcomes for a wide range of cancers are consistently better than the national average.

    For more than a decade, our Cancer Center has been consistently ranked among the top pediatric oncology programs in the country by U.S. News & World Report. For 2019-20, it has the highest ranking in the Northwest.

    Through our partnership in the Seattle Cancer Care Alliance (SCCA), your child will benefit from the work of physician-scientists at Fred Hutch and UW Medicine, as well as at Seattle Children’s. The National Cancer Institute has designated our partnership a comprehensive cancer center.

    Some parents learn their baby may have a germ cell tumor from a routine ultrasound during pregnancy. Our Prenatal Diagnosis and Treatment Program can help your family and obstetrician get ready for your baby’s birth and plan treatment.

  • 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, 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 doctors base their treatment plans on years of experience and the newest research on what works best – and most safely – for children.

    Our experts focus on how treatments today affect growing bodies in the future. Dr. Eric Chow chairs the Outcomes and Survivorship Committee of the Children’s Oncology Group (COG), an international organization of childhood cancer specialists.

  • 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 this 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.

  • Many children, adolescents and young adults with cancer participate in research while receiving their regular medical treatment. Research studies of new drugs and other promising treatment approaches are called clinical or therapeutic trials. Seattle Children’s is a founding member of the COG, which is working to improve care and cure rates for childhood cancer.

    Our research leadership means we can offer our patients the very latest options being studied, including phase 1 clinical trials. These early studies may be relevant if your child has a cancerous tumor that does not respond well to treatment or comes back. Read more about cancer clinical trials at Seattle Children’s.

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 near the breastbone.
  • A lump or pain in the belly, unusual increase in waist size or constipation. A tumor in the belly or in a girl’s ovaries may cause these symptoms.
  • A painless lump or swelling in the sac that holds a boy’s testicles (scrotum).
  • Trouble with vision, movement or balance. Changes in senses or personality. These could be symptoms of a brain tumor.
  • 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 tumors may cause this.
  • Extreme thirst and peeing a lot. Tumors in the brain may cause these.
  • Back pain.

Diagnosing Germ Cell Tumors

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

  • Do an exam to look for signs of disease.
  • Ask about your child’s health.
  • Do tests to learn more.
  • 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) scan
    • Neurological exam to check your child’s strength, balance and senses.
  • A routine ultrasound during pregnancy may show signs of a germ cell tumor before your baby is born. If this happens with your baby, the team at Seattle Children’s Prenatal Diagnosis and Treatment Program can work with you to get ready for the birth and 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. Risk level refers to 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.

  • 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 doctors remove the tumor, they know or suspect that some tumor cells remain. Blood tests for tumor markers may suggest the tumor is still active.
    • Stage 3: Doctors can still see parts of the tumor in your child’s body after treatment. Also, there are tumor cells in the lymph nodes.
    • Stage 4: Doctors find tumor cells have spread to other parts of the body far from the first tumor.
  • 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 goal of treatment 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 biological children (fertility preservation).

Your child’s doctor and health care 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 to remove the tumor is usually the only treatment if your child’s tumor is not cancerous (benign).

    For cancerous germ cell tumors, some children need only surgery. Others may have chemotherapy, too.

    • Often, doctors first do surgery to remove a small sample of tumor cells to check for cancer (biopsy) .
    • Sometimes doctors can remove most of the tumor when they do the biopsy.
    • After the 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.
    • Doctors may also remove nearby tissue if they suspect tumor cells have spread there.

    Surgery is done at our hospital’s main campus in Seattle.

    Learn more about surgery to treat tumors at Seattle Children’s.

  • If your child has a cancerous germ cell tumor, their treatment may include medicine called 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 cancer cells that may spread to other parts of your child’s body. Some children have only chemotherapy, not surgery.

    Our patients receive chemotherapy at our hospital’s main campus in Seattle. Most children with germ cell tumors stay overnight in our Cancer Care Unit. Some children get treatment at our outpatient infusion unit as a day procedure.

    See more about getting chemotherapy at Seattle Children’s.

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

    Radiation can harm a young child’s developing nervous system and affect bone growth. Our radiation oncologistDr. Ralph Ermoian, is very experienced in 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

  • Many children, adolescents and young adults choose to participate in research while receiving their standard medical treatment. These studies are called clinical or therapeutic trials.

    Researchers are trying to find out:

    • Which treatments have fewer long-term side effects.
    • If watchful waiting works just as well as chemotherapy after surgery for low-risk germ cell tumors. Watchful waiting means checking your child’s tumor regularly but not treating it unless it causes problems.

    As leaders in organizations like the Children’s Oncology Group (COG), Seattle Children’s can offer our patients the latest treatments being studied, including phase 1 clinical trials. These early studies are not available at most treatment centers. The COG aims to better understand how the disease works, develop new treatments and reduce late effects of cancer and treatments. The knowledge we gain through research improves the care we give all children with cancer.

    Learn more about cancer clinical trials at Seattle Children’s

Follow-up care

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

Most of our patients who had cancerous tumors visit Seattle Children’s regularly for follow-up care for 5 years. If you live far from Seattle, your child may get some follow-up care from a cancer doctor in your own community.

Our Cancer Survivor Program provides long-term follow-up care to help young people stay healthy after being treated for cancer in childhood.

During follow-up visits at Seattle Children’s, your child’s team 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

Contact Us 

If you would like an appointment, ask your child’s primary care provider for a referral.

If you have a referral or would like a second opinion, call the Cancer and Blood Disorders Center at 206-987-2106.

Providers, see how to refer a patient.