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Germ Cell Tumors of the Brain and Spinal Cord

What are germ cell tumors of the brain and spinal cord?

Germ cell tumors (GCTs) of the brain and spinal cord are rare. They are most often diagnosed in children and young adults.

These tumors usually develop in 1 of 2 brain regions: pineal or suprasellar. They can also develop in the spinal cord. The pineal region of the brain contains the pineal gland. The suprasellar region is located near the pituitary gland. Germ cell tumors of the brain and spinal cord do not usually spread throughout the body.

Medical illustration of brain antomy

Germ cell tumors can develop near the pineal gland or pituitary gland.

Symptoms of germ cell tumors of the brain and spinal cord

Signs and symptoms of a GST depend on the tumor size and location.

As the tumor grows, it may cause cerebral spinal fluid (CSF) to build up in the brain. This is hydrocephalus. It causes increased pressure in the brain.

Pressure on the brain tissue can cause many symptoms of GCT in the pineal region.

Depending on the region affected, symptoms may vary.

Pineal region tumor symptoms:

  • Headache
  • Nausea and vomiting 
  • Changes in energy level (fatigue)
  • Irritability
  • Memory problems
  • Changes in vision:
    • Double vision
    • Trouble looking up
    • Problems focusing on close objects 
    • Abnormal, repetitive eye movements without control (nystagmus)

Supracellar region symptoms:

  • Changes in endocrine function may cause:
    • Slowed growth
    • Early or delayed puberty
    • Increased thirst and urination (diabetes insipidus)
  • Vision problems if the tumor is close to the optic nerve
  • Memory problems

Risk factors and causes of germ cell tumors of the brain and spinal cord

The cause is unknown for most germ cell tumors of the brain and spinal cord. About 90% of these tumors occur in patients younger than age 20. Most of the tumors occur in early teens. Germ cell tumors are 2–3 times more common in males than females.

Types of germ cell tumors of the brain and spinal cord

Germ cell brain tumors of the brain and spinal cord are often classified as germinoma or nongerminomatous germ cell tumor (NGGCT). The tumor types include: 

  • Germinoma
  • Non-germinoma
    • Embryonal carcinoma
    • Yolk sac tumor / endodermal sinus tumor
    • Choriocarcinoma
    • Teratoma (immature and mature)
    • Mixed germ cell tumors

Germinomas are the most common type of germ cell tumor. Children with germinoma have a 90% chance of cure.

In the pineal region, GCTs occur mostly in males and are usually germinomas.

In the suprasellar region, males and females both get GCTs equally. NGGCTs and germinomas arise with equal frequency.

Diagnosis of germ cell tumors of the brain and spinal cord

A cancer diagnosis requires tests and procedures. The doctor will give your child a physical exam, get information about their health history, and order tests such as:

  • Biopsy
  • Imaging tests
  • Blood and urine tests
    • Complete blood count
    • Blood chemistry studies that measure levels of blood sugar and other substances
    • Chemical messages (hormones) made by the pituitary gland that affect the functions of other cells and organs
    • Tests for substances produced by cancer cells or other cells when cancer is present (tumor markers)
  • Neurological exam
  • Lumbar puncture to look for cancer cells in the cerebral spinal fluid and to test for tumor markers

See Waiting for Test Results

If a pathologist finds cancer cells in the biopsy sample, the lab will do more lab tests on the sample. These may include flow cytometry, immunophenotyping, and cytogenetic analysis.

Stages of germ cell tumors of the brain and spinal cord

These tumors rarely spread to other parts of the body beyond the central nervous system (brain and spinal cord). A germ cell tumor of the brain can spread to other parts of the central nervous system, including the spine and cerebrospinal fluid.

GTCs in the brain or spinal cord are described as newly diagnosed or recurrent.

Treatment of germ cell tumors of the brain and spinal cord

Treatment for germ cell tumors of the brain and spinal cord depends on several factors. These include:

  • The tumor’s size and location
  • The tumor type
  • If the cancer has spread
  • The child’s age and health

The main treatments for germ cell tumors of the brain and spinal cord are:

For recurrent disease, patients may get high-dose chemotherapy with stem cell rescue.

See Autologous Stem Cell (Bone Marrow) Transplant

Surgery is not often used to treat germinoma. However, as non-germinomas are harder to treat, surgery may be used to remove as much of the tumor as possible. The patient may need more chemotherapy and radiation therapy.

In some cases, doctors place a ventriculoperitoneal (VP) shunt or external shunt in the brain to prevent fluid from building up. Too much fluid can increase pressure on the brain, causing harm. A shunt is a small tube that drains cerebrospinal fluid so that it can be removed from the brain and reduce pressure. This can relieve many symptoms caused by brain tumors. The shunt may be temporary or permanent.

Prognosis for germ cell tumors of the brain and spinal cord

Your care team is the best source of information about your child's prognosis. The prognosis depends on several factors. These include:

  • Child’s age
  • Type of germ cell tumor
  • Type and level of tumor markers
  • Tumor’s location
  • Whether the tumor has spread
  • Whether the tumor has recurred

Germinomas in children usually respond well to treatment. The survival rate is about 90% in the United States.

Certain types of germ cell tumors of the brain and spinal cord have a better prognosis than others. Many factors also affect treatment and prognosis. Here is a general guide based on the tumor type:

Tumor Type
Favorable Germinoma
Mature teratoma
Intermediate Germinoma with syncytiotrophoblastic giant cells
Immature teratoma
Mixed tumors (germinoma or teratoma)
Teratoma with malignant transformation
Embryonal carcinoma
Yolk sac
Mixed tumor

Support for patients with germ cell tumors of the brain and spinal cord

Coping with a cancer diagnosis and treatment can be stressful for the patient and the family. You may want to talk to a social worker or a psychologist.

Learn more about how to talk to your child about cancer.

The impact of a brain tumor on a child’s quality of life varies widely. Some children with brain tumors show few lasting effects after treatment. Other children may have long-term problems.

Some problems are the result of injury to the brain from the tumor and/or surgery. Other changes may be due to long-term or late effects of chemotherapy and/or radiation.

Rehabilitation therapy can help address temporary or permanent physical problems. Therapy may include physical therapy, occupational therapy, speech therapy, vision assistance, and hearing aids.

Patients treated for brain tumors of the brain and spinal cord should be watched for changes or problems, including:

  • Weakness, balance, coordination
  • Thinking, learning, memory, attention, and processing information
  • Behavior, emotions, and social function
  • Speech, hearing, and vision problems
  • Seizures
  • Hormones and endocrine function (may have blood and/or stimulation tests)

Psychological services can help with emotional, social, developmental, and cognitive needs. School support is often needed after treatment for a brain tumor. Tell your care team if you need help to support your school-aged child during their illness.

Certain tests before and after treatment can help show education needs. The child’s care team can help parents plan for neuropsychological testing and academic accommodations, and work concerns for older patients.

Learn more: Keep up with school

Lifestyle habits can help your child’s brain and overall health. Some things your child can do are:

  • Eat healthy foods
  • Be physically active
  • Get enough sleep
  • Manage stress

After completing treatment, your child will need follow-up care to watch for recurrence and any late effects. These are health problems that happen months or years after the end of their treatment. Your child should:

  • Have regular checkups and screenings by a primary care provider
  • Maintain healthy habits to protect their health, including physical activity and healthy eating
  • Have a survivorship care plan to share with health providers. This includes:
    • Guidance on health screenings
    • Disease risk factors
    • How to improve health

Your child's doctor may also order imaging tests and exams to watch for recurrence (known as monitoring).

Patients with germ cell tumors of the brain and spinal cord are at risk for long-term problems in endocrine function. This could include diabetes insipidus and problems with pituitary gland function. Low pituitary function can lead to problems such as:

Hormone levels are important, so patients may need medicines that include hormone replacement.

Questions to ask your care team

  • What does the biopsy show?
  • What stage of cancer does my child have?
  • What are my child's treatment options?
  • What are the possible side effects of each treatment?
  • How does my child manage side effects?
  • Will my child need to be in the hospital for treatment?
  • Where is the treatment available? Is it close to home or will we have to travel?
  • What resources can help us cope with this illness?
  • What monitoring does my child need after treatment?
  • How can I help my child stay healthy?
  • What are the possible late effects of treatment?

Key points about germ cell tumors of the brain and spinal cord

  • Germ cell tumors (GCTs) of the brain and spinal cord are rare.
  • Symptoms vary, depending on the tumor’s type, size, and location.
  • The main treatments are radiation and chemotherapy.
  • The prognosis depends on the tumor type, location, how much it has spread, child’s age and health, and whether the cancer has recurred.
  • Patients will need long-term monitoring for late effects, recurrence, and supportive or rehabilitative care.

Reviewed: May 2023