• Germ Cell Tumors

    Germ cell tumors are masses of tissue formed by immature cells that normally would have developed into mature eggs (in a female) or sperm (in a male).

    • Ninety percent of germ cell tumors are gonadal, which means they begin in the reproductive cells of the testes (testicular tumors) or ovaries (ovarian tumors).
    • Germ cell tumors that appear in other parts of the body – including the abdomen, chest, neck, head and brain (the areas where the cells migrate within a developing embryo) – are called extragonadal germ cell tumors.

    Although germ cell tumors are rare in children under age 15, they are the most common solid tumors in adolescents, accounting for 14% of all cancers among those 15-19 years old.

    Note: Germ cell tumors of the brain are a type of extragonadal germ cell tumor, but are treated differently than germ cell tumors in other parts of the body. This page is focused on extracranial (outside of the brain) germ cell tumors.

    Germ Cell Tumor Treatment at Dana-Farber/Boston Children's

    Children with germ cell tumors are treated at Dana-Farber/Boston Children's through our Solid Tumor Center. Our specialists have extensive expertise in treating even the rarest of pediatric tumors, including germ cell tumors. Our solid tumor treatment team includes medical oncologists, surgical oncologists, radiation oncologists, and pediatric subspecialists who have unique expertise in treating germ cell tumors.

    How are germ cell tumors classified?

    Successfully treating your child’s germ cell tumor depends on where the tumor is located and whether it is benign or malignant. There are three main types of germ cell tumors: teratomas (mature and immature), seminomas and non-seminomas (including yolk sac tumors).

    • Teratomas and immature teratomas have developed into cells that resemble other tissues in the body. Generally, these tumors are not thought of as malignant, but their growth can severely impinge on the vital organs around them. The treatment is usually surgical; sometimes chemotherapy is necessary as well.
    • The other two types of tumors (seminoma and non-seminoma) are malignant. The difference between these two types is the degree of differentiation or maturation. Seminomas have not matured at all whereas non-seminomas have matured to resemble the early structures of fetal growth.

    What are the symptoms and causes of germ cell tumors?

    Germ cell tumors can cause a variety of symptoms in children based primarily on the size and location of the tumor. Keep in mind that the symptoms of a germ cell tumor may resemble other more common conditions or medical problems. It is important to consult your child's physician for a diagnosis.

    Each child may experience germ cell tumor symptoms differently, but your child's symptoms may include:

    • A tumor, swelling or mass that can be seen or felt
    • Constipation, incontinence and leg weakness if the tumor is located in the pelvis or abdomen
    • Shortness of breath if the tumor is located in the chest
    • Elevated levels of certain proteins secreted by the tumors into the blood
      • alpha-fetoprotein (AFP)
      • elevated levels of beta-human chorionic gonadotrophin (B-HCG)

    As a parent, you undoubtedly want to know what may have caused your child’s germ cell tumor. Doctors do not understand the cause of most germ cell tumors. Scientists do know that they can be associated with a number of other inherited defects of the ovaries or testes. For example, patients with Klinefelter syndrome have an increased risk of developing extragonadal germ cell tumors.

    However, it’s important to understand that germ cell tumors most often occur with no known cause. There’s nothing that you could have done or avoided doing that would have prevented the tumor from developing.

    How are germ cell tumors diagnosed?

    The first step in treating your child is forming an accurate and complete diagnosis. Some germ cell tumors can be seen on a prenatal ultrasound. After birth, they are typically diagnosed using a combination of imaging and biopsy.

    Your child’s physician may order a number of different diagnostic tests for germ cell tumors, including:

    • Prenatal ultrasound. Imaging during pregnancy can often identify these tumors as they are developing and prepare doctors for treatment following birth.
    • A physical exam and complete medical history.
    • Biopsy, which involves taking a sample of the tumor's tissue and analyzing it under a microscope.
    • A complete blood count, an analysis of your child's blood that involves measuring the size, number and maturity of different blood cells within a set volume of blood.
    • Additional blood tests may include blood chemistries, genetic testing and an evaluation of liver and kidney function.
    • Magnetic resonance imaging (MRI), a diagnostic procedure that produces detailed images by using a combination of large magnets, radiofrequencies and a computer to analyze organs and structures within the body. No x-rays or radiation are used.
    • Computerized tomography scan (also called a CT or CAT scan), a diagnostic imaging procedure that uses a combination of x-rays and computer technology to produce cross-sectional images, often called slices, of the body from horizontal and vertical perspectives. CT scans are more detailed than general x-rays.
    • X-ray, a diagnostic test that uses invisible energy beams to produce images of internal tissues, bones and organs on film.
    • Ultrasound/sonography, an imaging technique that uses high-frequency sound waves and a computer to create images of blood vessels, tissues, and organs. Ultrasounds are used to view internal organs as they function, and to assess blood flow through various vessels.

    There may be other diagnostic tests that your doctor will discuss with you depending on your child's individual situation. After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best possible treatment options.

    What are germ cell tumor treatments?

    Your child's physician will determine a specific course of germ cell tumor treatment based on several factors, including your child's age, overall health and medical history and the type, location, and size of the germ cell tumor.

    Germ cell tumor treatment generally includes:

    • Surgery: Pediatric surgeons will biopsy the tumor and attempt to remove it.

    If the tumor is malignant (cancerous), treatment may also include:

    • Chemotherapy:Chemotherapy is a drug that interferes with the cancer cell's ability to grow or reproduce. Chemotherapy before surgery may help shrink the tumor, making it possible to remove; used after surgery it can help fight a cancer's recurrence. Different groups of chemotherapy drugs work in different ways to fight cancer cells and shrink tumors. Your child may receive chemotherapy orally, as a pill to swallow; intramuscularly, as an injection into the muscle or fat tissue; intravenously, as a direct injection into the bloodstream, or IV; or intrathecally, as a direct injection into the spinal column through a needle.
    • Radiation: Our doctors use high-energy rays from a specialized machine to damage or kill cancer cells and shrink tumors.
    • Supportive care: Throughout your child's treatment, our doctors use supportive care to prevent and treat infections, minimize side effects of treatment, respond to complications and keep your child comfortable.

    What is the latest germ cell tumor research?

    Various research studies are underway to help build our understanding of how treatment types and dosages can be modified according to the tumor sub-type, stage, location on the body and the age and gender of the child – to provide the best possible outcome.

    Due to the rarity of germ cell tumors in children, however, statistically meaningful data with multivariate analysis is difficult to achieve. To address that, the Malignant Germ Cell International Collaborative (MaGIC) was formed. This consortium, led by A. Lindsay Frazier, MD, a pediatric oncologist at Dana-Farber/Boston Children’s, is a collaboration of the world’s experts in germ cell tumors, including pediatric, gynecologic and genito-urinary oncologists.

    Clinical Trials

    For many children with rare or hard-to-treat conditions, such as germ cell tumors, clinical trials – research studies evaluating new treatment approaches – provide new options.

    Participation in any clinical trial is completely voluntary. We will take care to fully explain all elements of the treatment plan prior to the start of the trial, and you may remove your child from the medical study at any time.

    What is the long-term outlook for children with germ cell tumors?

    Survival rates for children with germ cell tumors have increased significantly in the last several decades. This is largely due to findings from germ cell tumor clinical trials, some of which build off of effective treatments developed for adults with testicular germ cell tumors. As physician scientists continue to build our understanding of the molecular mutations within germ cell tumors, treatments tailored to the specific characteristics of each child’s tumor may be developed – which could further improve survival rates.

    Survival rates vary depending on the particular type of germ cell tumor and the stage of disease (how far it has progressed) when diagnosed. Overall, the survival is close to 90% for most children. Certain patients with more advanced disease have a worse prognosis and these patients in particular may want to consider enrollment in a clinical trial. Mature and immature teratomas can usually be surgically removed, The surgery should be done by an experienced surgeon to minimize possible long-term effects of surgery.. Chemotherapy for malignant germ cell tumors, however, may result in various late effects (side effects that appear later in adulthood), such as partial loss of hearing, cardiovascular concerns, or a secondary cancer later in life.

    Children treated for a malignant germ cell tumor should visit a cancer survivorship clinic every year to manage disease complications, screen for recurrence and manage late treatment side effects. A typical follow-up visit is likely to include a physical exam, laboratory testing and imaging scans.

    The David B. Perini, Jr. Quality of Life Clinic at Dana-Farber provides care and advocacy for survivors of childhood cancer, conducting research on the long-term effects of cancer treatments, and offering education and support for survivors of cancer. In addition to meeting with your pediatric oncologists, your child may see one of our endocrinologists, cardiologists, neurologists, neuro-psychologists or alternative/complementary therapy specialists. We also provide patient and family education, psychosocial assessment, genetic counseling, reproductive and fertility evaluation and counseling and opportunities to speak with other childhood cancer survivors.