Germ Cell Tumor - Childhood - Introduction
ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Germ Cell Tumors. Use the menu to see other pages. Think of that menu as a roadmap for this entire guide.
Germ cells are special cells in a developing embryo—also called the fetus or unborn baby—that become the eggs in ovaries or the sperm in testicles. Rarely, during development of the embryo, these cells may also travel to other areas of the body and form a tumor. A tumor is a mass that forms when normal cells change and grow out of control. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can spread to other parts of the body. A benign tumor means the tumor can grow but will not spread.
Types of germ cell tumors
Germ cells may travel to the chest, abdomen, or brain. Intracranial germ cell tumors are germ cell tumors that form in the brain. For information on a germ cell tumor in the brain, read about childhood central nervous system tumors . Extracranial germ cell tumors are found outside of the brain.
There are 2 different categories of germ cell tumors that start in the testicles or ovaries: seminomas and non-seminomas. Generally, non-seminomas tend to grow and spread more quickly than seminomas, but prompt diagnosis and treatment are important for both types of germ cell tumors.
Germ cell tumors outside of the brain are classified as either gonadal or extragonadal.
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Gonadal germ cell tumors. Gonadal germ cell tumors start and stay in a child’s reproductive organs, which are the testicles or ovaries. For more information on a germ cell tumor in the reproductive organs, read about ovarian and testicular cancer.
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Extragonadal germ cell tumors . Extragonadal germ cell tumors start in a child’s reproductive system but then travel to different parts of the body. Germ cells that occur outside the gonads (reproductive organs) and outside the brain are called extragonadal and extracranial. These generally occur in early childhood and commonly begin in the sacrum and the coccyx, which are the lowest parts of the spinal column. An extracranial, extragonadal germ cell tumor found in teenagers and young adults is often located in the mediastinum, which is the center of the chest.
This guide covers extracranial, extragonadal germ cell tumors.
Looking for More of an Introduction?
If you would like more of an introduction, explore these related items. Please note that these links will take you to other sections on Cancer.Net:
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Find a Cancer Doctor. Search for a cancer specialist in your local area using this free database of doctors from the American Society of Clinical Oncology (ASCO).
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Medical Terms. Learn what medical phrases and terms used in medical care and treatment mean.
The next section in this guide is Statistics . It helps explain the number of people who are diagnosed with a germ cell tumor and general survival rates. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Statistics
ON THIS PAGE: You will find information about the estimated number of children and teens who will be diagnosed with a germ cell tumor each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with a tumor are the same. Use the menu to see other pages.
Every person is different, with different factors influencing their risk of being diagnosed with this tumor and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for your child individually. The original sources for these statistics are provided at the bottom of this page.
How many children and teens are diagnosed with a germ cell tumor?
Extracranial, extragonadal germ cell tumors are rare.
Germ cell tumors, including those that occur in the reproductive organs, account for about 3% of all tumors in children younger than 15 and about 14% in teens ages 15 to 19.
What is the survival rate for a germ cell tumor?
There are different types of statistics that can help doctors evaluate a child or teen’s chance of recovery from a germ cell tumor. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having a tumor may affect life expectancy. Relative survival rate looks at how likely people with a germ cell tumor are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this tumor.
Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.
It is important to remember that statistics on the survival rates for children and teens with a germ cell tumor are only an estimate. They cannot tell an individual person if the tumor will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.
The 5-year relative survival rate for children younger than 15 is about 91%. The 5-year relative survival rate for children between 15 and 19 is 94%.
The survival rates for a germ cell tumor vary based on several factors. These include the stage of tumor, a person’s age and general health, and how well the treatment plan works.
The survival rate for children with a stage I or stage II germ cell tumor is 90%. The survival rates for children and teens with a germ cell tumor can be affected by several factors, including age, location of the tumor, and stage. The survival rate for a stage III tumor is 87%. The survival rate for a stage IV tumor is 82%.
Experts measure relative survival rate statistics for a germ cell tumor every 5 years. This means the estimate may not reflect the results of advancements in how a germ cell tumor is diagnosed or treated from the last 5 years. Talk with your child’s doctor if you have any questions about this information. Learn more about understanding statistics .
Statistics adapted from the St. Jude Children’s Research Hospital website; Shaikh F, et al.: Paediatric extracranial germ-cell tumours. The Lancet Oncology . 2016 Apr; 17(4):e149-e162 ( doi.org/10.1016/S1470-2045(15)00545-8 ) ; and Seigel R, et al.: Cancer Statistics 2023 . CA: A Cancer Journal for Clinicians . 2023 Jan; 73(1):17–48. doi/full/10.3322/caac.21763 . . (All sources accessed February 2023.)
The next section in this guide is Risk Factors . It describes the factors that may increase the chance of developing a germ cell tumor. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Risk Factors
ON THIS PAGE: You will find out more about the factors that increase the chance of developing a germ cell tumor. Use the menu to see other pages.
What are the risk factors for a germ cell tumor?
A risk factor is anything that increases a person’s chance of developing a tumor. Although risk factors often influence the development of a tumor, most do not directly cause a tumor. Some children with several risk factors never develop a tumor, while others with no known risk factors do.
The following factors may raise a child’s risk of developing an extracranial, gonadal germ cell tumor:
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Cryptorchidism. If a child has an undescended testicle, they have a higher risk of developing a testicular seminoma tumor. To learn more, see the full guide to testicular cancer on this same website.
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Turner syndrome. Turner syndrome is a genetic condition in which a girl is born with a missing X chromosome. This condition increases the risk of gonadoblastoma, a benign tumor that can eventually turn into cancer.
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Intersex conditions, such as androgen insensitivity syndrome. Androgen insensitivity syndrome is when the body of a person who is genetically male, with 1 X and 1 Y chromosome, is resistant to male hormones called androgens. A person with this syndrome has a higher risk of developing a gonadoblastoma or other germ cell tumors.
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Klinefelter’s syndrome. A person with this genetic condition is born genetically male but has an extra X chromosome, so they have XXY chromosomes. Klinefelter’s syndrome is connected to a higher risk of a germ cell tumor in the chest.
The next section in this guide is Symptoms and Signs . It explains what changes or medical problems a germ cell tumor can cause. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Symptoms and Signs
ON THIS PAGE: You will find out more about the changes and medical problems that can be a sign of a germ cell tumor. Use the menu to see other pages.
What are the symptoms and signs of a germ cell tumor?
A child with an extracranial, extragonadal germ cell tumor may experience one or more of the following symptoms and signs. Symptoms are changes that you can feel in your body. Signs are changes in something measured, like taking your blood pressure or doing a lab test. Together, symptoms and signs can help describe a medical problem. Sometimes, children with a germ cell tumor do not have any of the symptoms and signs described below. Or, the cause of a symptom or sign may be a medical condition that is not a tumor.
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Pain in the affected area
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Constipation, which is infrequent or difficult passage of stool
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Urinary retention, meaning the inability to urinate
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Cough and/or difficulty breathing
If you are concerned about any changes your child experiences, please talk with your child’s doctor. Your doctor will try to understand what is causing your child’s symptom(s). They may do an exam and order tests to understand the cause of the problem, which is called a diagnosis.
If a germ cell tumor is diagnosed, relieving symptoms remains an important part of your child’s medical care and treatment. Managing symptoms may also be called "palliative and "supportive care,” which is not the same as hospice care given at the end of life. This type of care focuses on managing symptoms and supporting people who face serious illnesses, such as a tumor. You can receive palliative and supportive care at any time during cancer treatment. Learn more in this guide’s section on Coping with Treatment .
Be sure to talk with your child’s health care team about the symptoms your child experiences, including any new symptoms or a change in symptoms.
The next section in this guide is Diagnosis . It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Diagnosis
ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. Use the menu to see other pages.
Doctors use many tests to find, or diagnose, a tumor. They also do tests to learn if a tumor has spread to another part of the body from where it started. If the tumor has spread, it is called metastasis. Doctors may also do tests to learn which treatments could work best.
For most types of tumors, a biopsy is the only sure way for the doctor to know whether an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.
How germ cell tumors are diagnosed
There are different tests used for diagnosing a germ cell tumor. Not all tests described here will be used for every child. Your child’s doctor may consider these factors when choosing a diagnostic test:
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The type of tumor suspected
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Your child's signs and symptoms
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Your child's age and medical condition
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The results of earlier medical tests
In addition to a physical examination, the following tests may be used to diagnose a germ cell tumor:
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Biopsy. A biopsy is the only way to make a definite diagnosis and determine whether the tumor is benign or cancerous, even if other tests can suggest that a tumor is present. During biopsy, a small amount of tissue is removed for examination under a microscope. A pathologist analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. The pathologist will examine the tissue sample for abnormalities in the cells. This is called a histologic examination. The pathologist will also examine the tissue sample for signs of cancer. This is called a cytologic examination.
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Blood tests
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Alpha-fetoprotein (AFP). A germ cell tumor may cause high levels of AFP. AFP is a protein that is produced by the fetal liver and has a half-life of 5 to 7 days. AFP is also a tumor marker in people with certain germ cell tumors, particularly testicular cancer . A tumor marker is a substance found in higher-than-normal amounts in the blood, urine, or body of people with certain kinds of tumors. The levels of AFP in the blood may be measured to monitor disease progress and to determine how well treatment for a germ cell tumor is working.
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Beta hCG. A germ cell tumor may also cause high levels of a hormone called beta human chorionic gonadotropin (hCG). Pregnancy can cause high levels of beta hCG in the blood. High levels of beta hCG in someone who is not pregnant could mean that a germ cell tumor is present.
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MicroRNA. MicroRNA are short segments of ribonucleic acid (RNA) that help control the process by which a gene gets turned on in a cell. Serum levels of a microRNA molecule called 371a-3p has been associated with testicular cancer.
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Ultrasound. An ultrasound creates a picture of the internal organs using sound waves. A tumor produces different echoes of the sound waves than normal tissue. When the sound waves are bounced back to a computer, creating images, the doctor can locate a mass inside the body.
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Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow.
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Magnetic resonance imaging (MRI). An MRI produces detailed images of the inside of the body using magnetic fields, not x-rays. MRI can be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow.
After diagnostic tests are done, your child’s doctor will review the results with you. If a germ cell tumor is diagnosed, these results also help the doctor describe the tumor. This is called staging.
The next section in this guide is Stages. It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Stages
ON THIS PAGE: You will learn about how doctors describe a tumor’s growth or spread. This is called the stage. Use the menu to see other pages.
What is tumor staging?
Staging is a way of describing where a tumor is located, if or where it has spread, and whether it is affecting other parts of the body.
Doctors use diagnostic tests to find out the tumor's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor recommend the best kind of treatment, and it can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of tumors.
There are 2 types of staging for germ cell tumors, based on whether the patient has had surgery yet. First, the "clinical stage" is based on the results of tests done before surgery, such as a physical examination, computed tomography (CT) scans, and magnetic resonance imaging (MRI). Then, the "pathologic stage" is assigned based on information found during surgery, plus the laboratory results of any tissue removed during surgery. The stage provides a common way of describing the tumor, so doctors can work together to plan the best treatments.
Stage groups for germ cell tumors
The following pathologic stages for germ cell tumors are from the Children's Oncology Group :
Stage I: The tumor has been entirely removed, and tumor markers are normal, or they return to normal after surgery.
Stage II: Microscopic traces of the tumor are still present after surgery. Tumor markers do not return to normal following surgery.
Stage III: Visible traces of tumor are left behind after initial treatment, and the lymph nodes are significantly affected.
Stage IV: The tumor has spread from where it began to other, more distant areas of the body.
Recurrent: A recurrent tumor has come back after treatment. If the tumor does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis .
Information about the tumor’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Types of Treatment
ON THIS PAGE: You will learn about the different types of treatments doctors use for children with a germ cell tumor. Use the menu to see other pages.
In general, a tumor in a child is uncommon. This means it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That is why more than 60% of children with cancer are treated as part of a clinical trial. A clinical trial is a research study that tests a new approach to treatment. The “standard of care” is the best treatments known based on previous clinical trials. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. The health and safety of all children participating in clinical trials are closely monitored.
To take advantage of these newer treatments, children with a germ cell tumor should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. If a pediatric cancer center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.
How germ cell tumors are treated
In many cases, a team of doctors works with a child and the family to provide care. This is called a multidisciplinary team. Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, dietitians, physical therapists, occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available. Learn more about the clinicians who provide cancer care.
Treatment options and recommendations depend on several factors, including the type and stage of tumor, possible side effects, and the patient’s preferences and overall health. Take time to learn about all of your child’s treatment options and be sure to ask questions about things that are unclear. Talk with your child’s doctor about the goal of each treatment and what your child can expect while receiving the treatment. These types of conversations are called “shared decision-making.” Shared decision-making is when you and your child's doctors work together to choose treatments that fit the goals of your child’s care. Shared decision-making is important for germ cell tumors because there are different treatment options. Learn more about making treatment decisions .
The common types of treatments used for a germ cell tumor are described below. Your child's care plan also includes treatment for symptoms and side effects, an important part of cancer care. Learn more about preparing your child for treatment.
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Surgery
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Chemotherapy
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Physical, emotional, social, and financial effects of a tumor
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Remission and chance of recurrence
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If treatment does not work
Surgery
Surgery is the removal of the tumor and some surrounding healthy tissue, known as a margin, during an operation. The surgery may be performed by a surgical oncologist, a doctor who specializes in treating tumors using surgery.
The goal of surgery is to remove as many tumor cells as possible. Some people with a germ cell tumor can be treated with surgery alone, such as a testicular germ cell tumor or an ovarian germ cell tumor. For others, additional treatments after surgery may be recommended.
Before surgery, talk with your child’s health care team about the possible side effects of the specific surgery your child will have and what recovery will be like. Learn more about the basics of cancer surgery .
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Chemotherapy
Chemotherapy is the use of drugs to destroy tumor cells, usually by keeping the tumor cells’ from growing, dividing, and making more cells. Chemotherapy is given by a pediatric oncologist or medical oncologist, a doctor who specializes in treating a tumor with medication.
Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Chemotherapy is often given through an intravenous (IV) tube placed into a vein using a needle or in a pill or as a pill or capsule that is swallowed. If your child is given oral medication to take at home, which is medicine taken by mouth, be sure to ask your health care team about how to safely store and handle it.
A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or a combination of different drugs given at the same time. Most patients with a cancerous germ cell tumor will need chemotherapy.
The drugs that are commonly used for treating germ cell tumors include bleomycin (available as a generic drug), cisplatin (available as a generic drug), etoposide (Etopophos), and ifosfamide (Ifex).
The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away after treatment is finished. Learn more about the basics of chemotherapy .
The medications used to treat germ cell tumors are continually being evaluated. Talking with your child’s doctor is often the best way to learn about the medications prescribed for your child, their purpose, and their potential side effects or interactions with other medications.
It is also important to let your doctor know if your child is taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with medications, causing unwanted side effects or reduced effectiveness. Learn more about your child's prescriptions by using searchable drug databases.
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Physical, emotional, social, and financial effects of a tumor
A tumor and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative and supportive care. It is an important part of your child’s care that is included along with treatments intended to slow, stop, or eliminate the cancer.
Palliative and supportive care focuses on improving how your child feels during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a diagnosis. People who receive palliative and supportive care along with treatment for the cancer often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.
Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. Your child may also receive palliative treatments, such as chemotherapy or surgery, to improve symptoms.
Before treatment begins, talk with your child’s doctor about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative and supportive care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your child's doctor about these resources, too.
Cancer care is often expensive, and navigating health insurance can be difficult. Ask your doctor or another member of your health care team about talking with a financial navigator or counselor who may be able to help with your financial concerns .
During treatment, your child’s health care team may ask you to answer questions about your child’s symptoms and side effects and to describe each problem. Be sure to tell the health care team if your child is experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.
Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative and supportive care in a separate section of this website.
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Remission and chance of recurrence
A remission is when a tumor cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.
A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions are permanent, it is important to talk with your child’s doctor about the possibility of the tumor returning. Understanding your child's risk of recurrence and the treatment options may help you feel more prepared if the tumor does return. Learn more about coping with the fear of recurrence.
If the tumor returns after the original treatment, it is called a recurrent tumor. It may come back in the same place, meaning it is a local recurrence, or nearby, which is a regional recurrence. If it comes back in another place, it is called a distant recurrence.
If a recurrence happens, a new cycle of testing will begin to learn as much as possible about it. After this testing is done, your child’s doctor will talk with you about the treatment options. Often, the treatment plan will include the treatments described above, such as chemotherapy, but may be used in a different combination or given at a different pace. A recurrent tumor may be treated with carboplatin (available as a generic drug), ifosfamide (Ifex), and paclitaxel (available as a generic drug). Bone marrow/stem cell transplantation or radiation therapy may also be used. Your child’s doctor may suggest clinical trials that are studying new ways to treat a recurrent germ cell tumor. Whichever treatment plan you choose, palliative and supportive care will be important for relieving symptoms and side effects.
When a tumor recurs, patients and their families sometimes experience emotions such as disbelief or fear. Families are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with recurrence .
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If treatment does not work
Although treatment is successful for many children with a germ cell tumor, sometimes it is not. If a child’s tumor cannot be cured or controlled, this is called advanced or terminal. This diagnosis is stressful, and advanced disease may be difficult to discuss. However, it is important to have open and honest conversations with your child’s doctor and health care team to express your family’s feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help.
Hospice care is designed to provide the best possible quality of life for people who are expected to live less than 6 months. Parents and guardians are encouraged to talk with the health care team about hospice options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families.
Some children may be happier and more comfortable if they can attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced care planning .
The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child .
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The next section in this guide is About Clinical Trials . It offers more information about research studies that are focused on finding better ways to care for people with a germ cell tumor. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - About Clinical Trials
ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are studied to see how well they work. Use the menu to see other pages.
What are clinical trials?
Doctors and scientists are always looking for better ways to care for children with a germ cell tumor. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.
Clinical trials are used for all types and stages of a germ cell tumor. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment.
Children who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.
Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your child’s doctor about clinical trials for symptoms and side effects.
Deciding to join a clinical trial
Patients decide to participate in clinical trials for many reasons. For some, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Others volunteer for clinical trials because they know these studies are a way to contribute to the progress in treating germ cell tumors. Even if they do not benefit directly from the clinical trial, their participation may benefit future people with a germ cell tumor.
Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the patient’s expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your child's treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials .
Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” You and your child will always be told when a placebo is used in a study. Find out more about placebos in cancer clinical trials.
Patient safety and informed consent
To join a clinical trial, parents and children must participate in a process known as informed consent. Informed consent means that parents give permission for their child to participate in a clinical trial and that teenagers give their consent to participate. During informed consent, the doctor should:
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Describe all of the patient’s options so that the person understands how the new treatment differs from the standard treatment.
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List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.
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Explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.
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Describe the purposes of the clinical trial and what researchers are trying to learn.
Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together. Your child will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials.
People who participate in a clinical trial may stop participating at any time for personal or medical reasons. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends.
Finding a clinical trial
Research through clinical trials is ongoing for all types of tumors. For specific topics being studied for germ cell tumors, learn more in the Latest Research section.
Cancer.Net offers more information about cancer clinical trials in other areas of the website, including a complete section on clinical trials .
There are many resources and services to help you search for clinical trials for germ cell tumors, including the following services. Please note that these links will take you to separate, independent websites:
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ClinicalTrials.gov. This U.S. government database lists publicly and privately supported clinical trials.
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World Health Organization (WHO) International Clinical Trials Registry Platform. The WHO coordinates health matters within the United Nations. This search portal gathers clinical trial information from many countries’ registries.
Read more about the basics of clinical trials matching services .
In addition, you can find a free video-based educational program about cancer clinical trials located in another section of this website.
The next section in this guide is Latest Research . It explains areas of scientific research for germ cell tumors. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Latest Research
ON THIS PAGE: You will read about the scientific research being done to learn more about germ cell tumors and how to treat them. Use the menu to see other pages.
Doctors are working to learn more about germ cell tumors, ways to prevent them, how to best treat them, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your child’s doctor about the best diagnostic and treatment options for your child.
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Combination chemotherapy. Clinical trials are investigating new combinations of chemotherapy to treat extracranial, extragonadal germ cell tumors.
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High-dose therapy. A clinical trial called the TIGER trial is researching using high-dose chemotherapy instead of the standard dose that is offered for germ cell tumors, especially for testicular tumors that have come back.
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New method for classifying germ cell tumors. Researchers are looking for new ways to classify tumors so that doctors can better identify those patients who have a high risk of the tumor returning after treatment. This evidence points to a new form of classification for high-risk tumors, which is similar to the way that adult germ cell tumors are identified.
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Palliative and supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current germ cell tumor treatments to improve comfort and quality of life for patients.
Looking for More About the Latest Research?
If you would like more information about the latest areas of research in germ cell tumors, explore these related items that take you outside of this guide:
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To find clinical trials specific to your diagnosis, talk with your child’s doctor or search online clinical trial databases now .
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Get updates from Cancer.Net delivered right to your inbox. Subscribe to the Inside Cancer.Net email newsletter.
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Visit the website of Conquer Cancer, the ASCO Foundation to find out how to help support cancer research. Please note that this link takes you to a separate ASCO website.
The next section in this guide is Coping with Treatment . It offers some guidance on how to cope with the physical, emotional, social, and financial changes that a tumor and its treatment can bring. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Coping with Treatment
ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of childhood cancer and its treatment. Use the menu to see other pages.
Every treatment can cause side effects or changes to your child’s body and how they feel. For many reasons, people do not experience the same side effects even when given the same treatment for the same type of tumor. This can make it hard to predict how your child will feel during treatment.
READ MORE BELOW:
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Coping with physical side effects
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Coping with emotional and social effects
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Coping with the costs of medical care
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Coping with barriers to care
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Talking with your child’s health care team about side effects
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Caring for a child with a germ cell tumor
As your family prepares to start treatment, it is normal to fear treatment-related side effects . It may help to know that your child's health care team will work to prevent and relieve side effects. This part of treatment is called palliative and supportive care. It is an important part of your child’s treatment plan, regardless of their age or the stage of disease.
Coping with physical side effects
Common physical side effects from each treatment option for germ cell tumors are described in the Types of Treatment section. Learn more about side effects of a tumor and its treatment, along with ways to prevent or control them . Changes to your child’s physical health depend on several factors, including the tumor’s stage, the length and dose of treatment, and your child’s general health.
It is important to discuss any new side effects or changes in existing side effects with your child’s health care team. Providing this information helps them find ways to treat or manage the side effects so your child feels more comfortable and can potentially keep any side effects from worsening.
You may find it helpful to keep track of your child’s side effects so you are prepared to discuss any changes with the health care team. Learn more about why tracking side effects is helpful .
Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. Side effects that occur months or years after treatment are called late effects . Treating long-term side effects and late effects is an important part of care for childhood cancer survivors. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.
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Coping with emotional and social effects
Your family can have emotional and social effects after a diagnosis. This may include dealing with a variety of emotions, such as sadness, fear, anxiety, or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.
You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your family’s needs.
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Coping with the costs of medical care
Treatment can be expensive. It can be a source of stress and anxiety for families dealing with a germ cell tumor diagnosis. In addition to treatment costs, many people find they have extra, unplanned expenses related to their child’s care. Families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.
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Coping with barriers to care
Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer. These differences are called “health disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health , such as where a person lives and whether they have access to food and health care. Health disparities more often negatively affect racial and ethnic minorities , people with fewer financial resources , sexual and gender minorities (LGBTQ+) , adolescent and young adult populations , adults older than 65 , and people who live in rural areas or other underserved communities .
If your child is having difficulty getting the care they need, talk with a member of the health care team or explore other resources that help support medically underserved people .
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Talking with your health care team about side effects
Before starting treatment, talk with your child’s doctor about possible side effects. Ask:
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Which side effects are most likely?
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When are they likely to happen?
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What can we do to prevent or relieve them?
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When and who should we call about side effects?
Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, social, and financial effects of cancer.
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Caring for a child with a germ cell tumor
Family members and friends often play an important role in taking care of a person with a germ cell tumor. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family members can give your family valuable support, even if they live far away.
When your child has a germ cell tumor, you may have an additional range of responsibilities. These may include giving medications or managing symptoms and side effects. However, it is important to seek help from others. Below are some of the responsibilities your family or friends could help with:
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Providing short-term care for your child
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Giving support and encouragement
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Assisting with meals or household chores
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Helping with insurance and billing issues
A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. Ask how much care your child may need at home and with daily tasks during and after treatment. Use this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print.
Learn more about caregiving or read the ASCO Answers Guide to Caring for a Loved One With Cancer in English or Spanish .
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Looking for More on How to Track Side Effects?
Cancer.Net offers several resources to help you keep track of symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:
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Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of your child's symptoms and side effects.
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ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression , constipation , diarrhea , and rash that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so it is easy to print, fill out, and give to your health care team.
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The next section in this guide is Follow-up Care . It explains the importance of checkups after your child finishes treatment. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Follow-Up Care
ON THIS PAGE: You will read about your child’s medical care after treatment for the germ cell tumor is finished and why this follow-up care is important. Use the menu to see other pages.
Care for children diagnosed with a germ cell tumor does not end when active treatment has finished. Your child’s health care team will continue to check that the tumor has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for a germ cell tumor should have life-long, follow-up care.
Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead. Generally, children treated for a germ cell tumor are monitored using physical examinations, x-rays, and blood tests for 2 years after treatment ends to check for possible recurrence. After this time, it is unlikely that the tumor will recur, and the focus of follow-up care changes to watching for possible late side effects of chemotherapy, if it was given. Be sure to talk with your child’s doctor about the specific risks based on the specific chemotherapy your child received.
Rehabilitative services may be recommended, and this could mean any of a wide range of services such as physical therapy, occupational therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent as possible. Learn more about this type of rehabilitation.
Learn more about the importance of follow-up care .
Watching for recurrence
One goal of follow-up care is to check for a recurrence, which means that the tumor has come back. A tumor recurs because small areas of tumor cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.
During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your doctor will ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of tumor first diagnosed and the types of treatment given.
The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress .
Managing long-term and late side effects
Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years after treatment has ended. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems, and second cancers, which is a new cancer that happens in someone who has had cancer before. They also include emotional problems, such as anxiety and depression, and problems with memory, thinking, attention, and learning.
Because of the effects of the drugs most commonly used to treat a germ cell tumor, regular tests may be needed for kidney function; lung function; fertility, which is the ability to have children; blood cell production; growth and development problems; and the possibility of secondary cancers. Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.
The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult survivors that can be found on a separate website: www.survivorshipguidelines.org .
Keeping a child’s personal health record
You are encouraged to organize and keep a personal record of your child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, they have a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. The American Society of Clinical Oncology (ASCO) offers forms to help create a treatment summary to keep track of the treatment your child received and develop a survivorship care plan when treatment is completed.
Some children continue to see their oncologist, while others transition back to the care of their pediatrician, primary care doctor, or another health care professional. This decision depends on several factors, including the type and stage of tumor, treatments received, side effects, health insurance rules, and your family’s personal preferences. Talk with your health care team about your child’s ongoing medical care and any concerns you have about their future health.
If a doctor who was not directly involved in your child’s medical care will lead the follow-up care, be sure to share the treatment summary and survivorship care plan forms with them and with all future health care providers. Details about the specific medical treatment given are very valuable to the health care professionals who will care for your child throughout their lifetime.
The next section in this guide is Survivorship . It describes how to cope with challenges in everyday life after a diagnosis. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Survivorship
ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s diagnosis. Use the menu to see other pages.
What is survivorship?
The word “survivorship” means different things to different people, but it often describes living with, through, and beyond cancer. In some ways, survivorship is one of the most complicated parts of the cancer experience because it is different for every child and their family.
After active treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a diagnosis. Other families stay very anxious about their child’s health and become uncertain about coping with everyday life.
One source of stress may occur when frequent visits to the health care team end after completing treatment. Often, relationships built with the health care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, learning or school problems, emotional challenges, sexual development and fertility concerns, and/or financial issues.
Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:
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Understanding the challenge your family is facing
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Thinking through solutions
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Asking for and allowing the support of others
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Feeling comfortable with the course of action your family chooses
It may be helpful to join an in-person support group or online community of childhood cancer survivors. Support groups also exist for parents of children diagnosed with cancer. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the place where your child received treatment.
Healthy living after cancer
Survivorship often serves as a strong motivator to make lifestyle changes, often for the whole family.
Children who have had a tumor can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, limiting alcohol, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices .
It is important that your child has recommended medical checkups and tests (see Follow-up Care ) to take care of their health.
In addition, the Children’s Oncology Group has information to help children and parents navigate the steps after treatment of a germ cell tumor . Please note this link will take you to a separate, independent website.
Talk with your doctor to develop a survivorship care plan that is best for your child’s needs.
Changing role of caregivers
Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with a tumor, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.
However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving in this article .
Looking for More Survivorship Resources?
For more information about survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:
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Survivorship Resources: Cancer.Net offers information and resources to help survivors cope, including specific sections for children and teens and young adults . There is also a main section on survivorship for people of all ages.
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ASCO Answers Guide to Cancer Survivorship: Get this 48-page booklet that can help with the transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The booklet is available as a PDF, so it is easy to print.
The next section offers Questions to Ask the Health Care Team to help start conversations with your child’s health care team. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Questions to Ask the Health Care Team
ON THIS PAGE: You will find some questions to ask your child's doctor or other members of your health care team, to help you better understand your child’s diagnosis, treatment plan, and overall care. Use the menu to see other pages.
Talking often with the health care team is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your child’s next appointment, or download Cancer.Net’s free mobile app for a digital list and other interactive tools to manage your child’s care. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.
Questions to ask after getting a diagnosis
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What type of tumor does my child have?
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Where is the germ cell tumor located?
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Is it cancerous? What does this mean?
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What is the germ cell tumor's stage? What does this mean?
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Can you explain my child’s pathology report (laboratory test results) to me?
Questions to ask about choosing a treatment and managing side effects
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What are my child’s treatment options?
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What types of research are being done for germ cell tumors in clinical trials? Do clinical trials offer additional treatment options for my child?
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What treatment plan do you recommend? Why?
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What is the goal of each treatment? Is it to eliminate the tumor, help my child feel better, or both?
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What are the possible side effects of this treatment, both in the short term and the long term?
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Who will be part of my child’s health care team, and what does each member do?
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Who will be leading my child’s overall treatment?
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How will this treatment affect my child’s daily life? Will they be able to go to school and perform their usual activities?
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Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should my family talk with a fertility specialist before treatment begins?
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If I'm worried about managing the costs of medical care, who can help me?
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If I have questions or problems, who should I call?
Questions to ask about having surgery
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What type of surgery will my child have? Will lymph nodes be removed?
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How long will the operation take?
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How long will my child be in the hospital?
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Can you describe what the recovery from surgery will be like?
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What side effects can we expect right after surgery? How will they be managed?
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Who should I contact about any side effects my child experiences? And how soon?
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What are the possible long-term effects of having this surgery?
Questions to ask about having chemotherapy
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What type of chemotherapy is recommended?
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What is the goal of this treatment?
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How long will it take to give this treatment?
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Will my child receive this treatment at a hospital or clinic? Or will they take it at home?
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What side effects can be expected during treatment?
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Who should I contact about any side effects my child experiences? And how soon?
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What are the possible long-term or late effects of having this treatment?
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What can be done to prevent, relieve, or manage the side effects?
Questions to ask about planning follow-up care
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What is the chance that the tumor will come back? Should I watch for specific signs or symptoms?
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What long-term side effects or late effects are possible based on the treatment my child received?
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What follow-up tests will my child need, and how often will those tests be needed?
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How do I get a treatment summary and survivorship care plan to keep in my child's personal records?
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When should my child return to their primary care doctor for regular medical care?
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Who will be leading my child’s follow-up care?
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What survivorship support services are available to my child? To my family?
The next section in this guide is Additional Resources. It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.
Germ Cell Tumor - Childhood - Additional Resources
ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about medical care and treatment. This is the final page of Cancer.Net’s Guide to Childhood Germ Cell Tumors. Use the menu to go back and see other pages.
Cancer.Net includes many other sections about the medical and emotional aspects of being diagnosed with a germ cell tumor, both for the child and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.
Here are a few links to help you explore other parts of Cancer.Net:
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Read more about the first steps to take when your child is diagnosed with a tumor .
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Find out more about clinical trials as a treatment option.
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Get information about managing the financial costs of medical care.
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Learn more about coping with the emotions that a serious diagnosis can bring, including those within a family or a relationship.
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Find a national, not-for-profit advocacy organization that may offer additional information, services, and support for people with a germ cell tumor.
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Explore what to do when your child finishes active treatment .
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Download Cancer.Net Mobile , a free app that includes a symptom and side effect tracker, medication reminders, and other interactive resources.
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To find a range of information and insights from different voices on timely cancer topics, visit the Cancer.Net Blog .
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Watch Cancer.Net videos with ASCO experts, patients, and caregivers explaining the basics of cancer treatment, side effects, survivorship, clinical trials, caregiving, and more.
This is the end of Cancer.Net’s Guide to Childhood Germ Cell Tumors. Use the menu to choose a different section to read in this guide.
