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Germ Cell Tumor - Childhood - Introduction

Approved by the Lineagotica Editorial Board, 01/2018

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 Lineagotica’s Guide to Childhood Germ Cell Tumor. Use the menu to see other pages. Think of that menu as a roadmap for this complete guide.

Germ cells are special cells in a developing embryo—also called the fetus or unborn baby—that become the eggs in girls’ ovaries or the sperm in boys’ 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. Germ cell tumors that form in the brain are called intracranial germ cell tumors. 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 tumor.

Germ cell tumors outside of the brain can be divided into gonadal and extragonadal. 

  • 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.

  • Extragonadal germ cell tumors. Extragonadal germ cell tumors start in a child’s reproductive system but 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. Extracranial, extragonadal germ cell tumors found in teenagers and young adults are often located in the mediastinum, which is the center of the chest.

This summary covers extracranial, extragonadal germ cell tumors.

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The next section in this guide is Statistics. It helps explain the number of people who are diagnosed with this disease and general survival rates. You may use the menu to choose a different section to read in this guide.

Germ Cell Tumor - Childhood - Statistics

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will find information about the number of children who are diagnosed with this type of tumor each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors. Use the menu to see other pages.

Extracranial, extragonadal germ cell tumors are rare.

Extracranial 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 adolescents age 15 to 19.

The survival rate tells you what percent of children live after a tumor is found. Percent means how many out of 100. The survival rate for children with a stage I or stage II germ cell tumor is 90%. The survival rate for a stage III tumor is 87%, while the survival rate for a stage IV tumor is 82%. Learn more about the stages of germ cell tumors.

It is important to remember that statistics on the survival rates for children with a germ cell tumor are an estimate. The estimate comes from annual data based on the number of children with this tumor in the United States. Parents should talk with their child’s doctor if they have questions about this information. Learn more about understanding statistics.

Sources: The CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2009–2013, the National Cancer Institute, and St. Jude Children’s Research Hospital.

The next section in this guide is Risk Factors. It explains what factors may increase the chance of developing this disease. You may use the menu to choose a different section to read in this guide.

Germ Cell Tumor - Childhood - Risk Factors

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of tumor. Use the menu to see other pages.

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: 

  • Cryptorchidism. If a boy has an undescended testicle, he has a higher risk of developing a testicular seminoma tumor. To learn more, see the full guide to testicular cancer on another part of Lineagotica.

  • Turner syndrome. Turner syndrome is a genetic condition in which a girl is born with a missing X chromosome. Girls with this condition have a higher risk of developing a gonadoblastoma, a benign tumor that can eventually turn into cancer.

  • 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.

The following factor may raise a person’s risk of developing an extracranial, extragonadal germ cell tumor: 

  • Klinefelter’s syndrome. Men with this genetic condition are born with an extra X chromosome. 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 body changes or medical problems this disease can cause. Or, use the menu to choose another section to continue reading this guide.  

Germ Cell Tumor - Childhood - Symptoms and Signs

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. Use the menu to see other pages.

A child with an extracranial, extragonadal germ cell tumor may experience the following symptoms and signs. Sometimes, children with this type of tumor do not have any of these changes. Or, the cause of a symptom may be a different medical condition that is not cancer. 

  • Pain in the affected area

  • Constipation, which is infrequent or difficult passage of stool

  • Urinary retention, meaning the inability to urinate

  • 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 ask how long and how often your child has been experiencing the symptom(s), in addition to other questions. This is to help figure out the cause of the problem, called a diagnosis.

If a germ cell tumor is diagnosed, relieving symptoms remains an important part of your child’s medical care and treatment. This may also be called symptom management, palliative care, or supportive care. 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. You may use the menu to choose another section to read in this guide.

Germ Cell Tumor - Childhood - Diagnosis

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of the 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 this happens, it is called metastasis. For example, imaging tests can show if the tumor has spread. Imaging tests show pictures of the inside of the body. 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.

This list describes options for diagnosing this type of tumor. Not all tests listed below will be used for every child. Your child’s doctor may consider these factors when choosing a diagnostic test: 

  • The type of tumor suspected

  • Your signs and symptoms

  • Your age and medical condition

  • The results of earlier medical tests 

In addition to a physical examination, the following tests may be used to diagnose a germ cell tumor: 

  • Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that a germ cell tumor is present, but only a biopsy can make a definite diagnosis and determine if the tumor is benign or cancerous. A pathologist then 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.

  • Blood tests.

    • Alphafetoprotein (AFP). A germ cell tumor may cause high levels of AFP, which is a protein that increases in the mother’s blood during pregnancy. This protein is produced by the fetal (unborn child’s) liver and yolk sac, a pouch that protects the embryo early in development. It can be detected by amniocentesis, a test used to monitor the health of a fetus by using a needle inserted into the abdomen and uterus of a pregnant woman to collect amniotic fluid. AFP is also a tumor marker in people with certain germ cell tumors. 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 monitored to determine how well a treatment is working. 

    • Beta HCG. A germ cell tumor may also cause high levels of beta human chorionic gonadotropin (hCG). Women who are pregnant produce high levels of the hormone beta hCG in their blood. High levels of beta hCG in a woman who is not pregnant could mean that a germ cell tumor is present.

  • Ultrasound. An ultrasound uses sound waves to create a picture of the internal organs. 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. 

  • Computed tomography (CT or CAT) scan. A CT scan creates a 3-dimensional picture of the inside of the body using x-rays taken from different angles. A computer combines these images into a detailed, cross-sectional view 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 to swallow. 

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. 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 to swallow.

After diagnostic tests are done, your child’s doctor will review all of 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 see other pages.

Germ Cell Tumor - Childhood - Stages

Approved by the Lineagotica Editorial Board, 01/2018

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.

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 to decide what kind of treatment is best and 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, CT scans, and MRI tests. 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 cancer so doctors can work together to plan the best treatments.

Cancer stage grouping

According to the Children’s Oncology Group, the following pathologic stages are used for germ cell tumors:

Stage I: The tumor has been entirely removed, and tumor markers are normal, or 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 its original site to other, more distant areas of the body.

Recurrent: A recurrent tumor is one that 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 Treatment Options. You may use the menu to choose a different section to read in this guide.

Germ Cell Tumor - Childhood - Treatment Options

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will learn about the different treatments doctors use for children with this type of 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. 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. 

Treatment overview

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 and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Descriptions of the most common treatment options for a germ cell tumor are listed below. 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. Your child’s care plan may also include treatment for symptoms and side effects, an important part of cancer care. 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. Learn more about making treatment decisions.

Surgery

The goal of surgery is to remove the tumor and some surrounding healthy tissue, known as a margin, in an effort to remove all tumor cells. The surgery may be performed by a surgical oncologist, a doctor who specializes in treating tumors using surgery. Some people with a germ cell tumor can be treated with surgery alone, including boys with a testicular germ cell tumor and girls with an ovarian germ cell tumor that is completely removed by surgery. For ovarian tumors, this can also be treated with surgery alone.

Before surgery talk with your child’s health care team about the possible side effects of the specific surgery your child will have. Learn more about the basics of cancer surgery

Chemotherapy

Chemotherapy is the use of drugs to destroy tumor cells, usually by ending the tumor cells’ ability to grow and divide. Chemotherapy is given by a pediatric or medical oncologist, a doctor who specializes in treating a tumor with medication.

Systemic chemotherapy is gets into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed.

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 combinations 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 (Blenoxane), cisplatin (Platinol), and etoposide (VePesid, Toposar).

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 and preparing for treatment. 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. Learn more about your prescriptions by using searchable drug databases.                                     

Getting care for symptoms and side effects

A tumor and its treatment often cause side effects. In addition to treatments intended to slow, stop, or eliminate the tumor, an important part of care is relieving a child’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the treatment process for high risk patients. People often receive treatment for the tumor at the same time that they receive treatment to ease side effects. In fact, people who receive both at the same time often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. Your child may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, or surgery. Talk with your child’s doctor about the goals of each treatment in the treatment plan.

Before treatment begins, talk with your child’s health care team about the possible side effects of your child’s specific treatment plan and palliative care options. During and after treatment, be sure to tell the doctor or another health care team member if your child is experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care.

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 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 does return after the original treatment, it is called 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 a distant recurrence.

When this occurs, a new cycle of testing will begin again to learn as much as possible about the recurrence. After this testing is done, your child’s doctor will talk with you about 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 (Paraplat, Paraplatin, Becenum), ifosfamide (Cyfos, Ifex, Ifosfamidum), and paclitaxel (Taxol). 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 this type of recurrent tumor. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

When a tumor recurs, patients and their families often 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.

If treatment doesn’t work

Although treatment is successful for the majority of 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 is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

Hospice care is a type of palliative care for people who are expected to live less than 6 months. It is designed to provide the best possible quality of life for people who are near the end of life. 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 if they can arrange to 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.

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. You may use the menu to choose a different section to read in this guide.

Germ Cell Tumor - Childhood - About Clinical Trials

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested 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. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. These types of studies evaluate new drugs, different combinations of existing 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 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. There are also clinical trials studying ways to prevent tumors.

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some patients, 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. Other patients 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 patients with a germ cell tumor.

Insurance coverage of clinical trials costs differs 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 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.” The use of placebos in cancer clinical trials in this way is rare overall and not done at all in childhood cancer research. 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. During informed consent, the doctor should:

  • Describe all of the patient’s options so that the person understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • 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.

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.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. 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 tumor, learn more in the Latest Research section.

Lineagotica offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of tumor.

PRE-ACT, Preparatory Education About Clinical Trials

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide. 

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for this type of tumor. You may use the menu to choose a different section to read in this guide.

Germ Cell Tumor - Childhood - Latest Research

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of tumor and how to treat it. Use the menu to see other page.

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. 

  • Combination chemotherapy. Clinical trials are underway to investigate new combinations of chemotherapy to treat extracranial, extragonadal germ cell tumors.

  • High-dose therapy. A clinical trial called the “TIGER trial” is researching the option to use high-dose chemotherapy instead of the standard dose that is offered for germ cell tumors, especially testicular tumors that have come back.

  • 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.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current germ cell tumor treatments to improve patients’ comfort and quality of life. 

Looking for More about Latest Research? 

If you would like additional information about the latest areas of research regarding germ cell tumors, explore these related items that take you outside of this guide: 

The next section in this guide is Coping with Treatment. It offers some guidance in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. You may use the menu to choose a different section to read in this guide.

Germ Cell Tumor - Childhood - Coping with Treatment

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of childhood cancer and its treatment. This page includes several links outside of this guide to other sections of this website. Use the menu to see other pages.

Every treatment can cause side effects or changes to your child’s body and how he or she feels. For many reasons, people don’t experience the same side effects even when given the same treatment for the same type of cancer. This can make it hard to predict how your child will feel during treatment.

As your family prepares to start treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of treatment “palliative care.” It is an important part of your child’s treatment plan, regardless of his or her age or the stage of disease. 

Coping with physical side effects

Common physical side effects from each treatment option for germ cell tumor are described within the Treatment Options 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.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment 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.

Coping with emotional and social effects

Your family can have emotional and social effects as well as physical effects after a diagnosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in response.

Patients and their families are encouraged to share their feelings with a member of their health care team. 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.

Coping with financial effects

Treatment can be expensive. It is often a big source of stress and anxiety for families dealing with a cancer 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.

Caring for a child with cancer

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: 

  • Providing short-term care for your child

  • Giving support and encouragement

  • Assisting with meals or household chores

  • Helping with insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects 

Before starting treatment, talk with your child’s doctor about possible side effects. Ask: 

  • Which side effects are most likely?

  • When are they are likely to happen?

  • What can we do to prevent or relieve them? 

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, and social effects of cancer. 

Also, ask how much care your child may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan. 

The next section in this guide is Follow-up Care. It explains the importance of checkups after your child finishes treatment. You may use the menu to choose a different section to read in this guide.

Germ Cell Tumor - Childhood - Follow-Up Care

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will read about your child’s medical care after cancer treatment 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 doesn’t end when active treatment has finished. Your child’s health care team will continue to check to make sure the tumor has not returned, 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 given. Be sure to talk with your child’s doctor about the specific risks based on the specific chemotherapy used to treat your child.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. 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 originally diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” 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 afterwards. Late effects can occur almost anywhere in the body and include physical problems, such as heart and lung problems and second cancers, and emotional and cognitive (memory, thinking, and attention) problems, such as anxiety, depression, and learning difficulties.

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 the child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. 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 family doctor or another health care professional. This decision depends on several factors, including the type and stage of tumor, 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 his or her 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 him or her, 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 his or her lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a diagnosis. You may use the menu to choose a different section to read in this guide.

Germ Cell Tumor - Childhood - Survivorship

Approved by the Lineagotica Editorial Board, 01/2018

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 complex aspects of the cancer experience because it is different for every patient and his or her 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, educational issues, 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: 

  • Understanding the challenge your family is facing

  • Thinking through solutions

  • Asking for and allowing the support of others

  • 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 you received treatment.

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.

Healthy living after cancer

Survivorship often serves as a strong motivator to make positive lifestyle changes, often for the family as a whole.

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, 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 his or her health. Rehabilitation may be recommended, and this could mean any of a wide range of services such as physical 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 and productive as possible.

In addition, the Children’s Oncology Group has information to help children and parents navigate the steps after treatment of a germ cell tumor.

Talk with your doctor to develop a survivorship care plan that is best for your child’s needs.

Looking for More Survivorship Resources? 

For more information about survivorship, explore these related items. Please note these links will take you to other sections of Lineagotica:

  • Survivorship Resources: Lineagotica offers a lot of information and resources to help survivors cope, including specific sections for children, teens, and young adults. There is also a main section on survivorship for people of all ages.

  • ASCO Answers Cancer Survivorship Guide: Get this 44-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 out.

  • Lineagotica Patient Education Video: View a short video led by an ASCO expert that provides information about childhood cancer survivorship.

The next section offers Questions to Ask the Health Care Team to help start conversations with your child’s health care team. You may use the menu to choose a different section to read in this guide.

Germ Cell Tumor - Childhood - Questions to Ask the Health Care Team

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will find some questions to ask your 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 doctor 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 Lineagotica’s free mobile app for a digital list and other interactive tools to manage your child’s care.

Questions to ask after getting a diagnosis 

  • What type of tumor does my child have?

  • Where is it located?

  • Is it cancerous?

  • If so, what stage is the cancer?

  • Can you explain my child’s pathology report, or laboratory test results, to me? 

Questions to ask about choosing a treatment and managing side effects 

  • What are my child’s treatment options?

  • What clinical trials are available for my child? Where are they located, and how do I found out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the tumor, help my child feel better, or both?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • Who will be part of my child’s health care team, and what does each member do?

  • Who will be leading my child’s overall treatment?

  • How will this treatment affect my child’s daily life? Will my child be able to go to school and perform his or her usual activities?

  • Could this treatment affect my child’s ability to become pregnant or have children? If so, should I family talk with a fertility specialist before my child’s cancer treatment begins?

  • If I am worried about managing the costs of medical care, who can help me?

  • Whom should I call for with questions or problems?

  • Is there anything else I should be asking? 

Questions to ask about planning follow-up care

  • What is the chance that the tumor will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the cancer treatment I received?

  • What follow-up tests will my child need, and how often will he or she need them?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • Who will be leading my child’s follow-up care?

  • What survivorship support services are available to my child? To my family?

The next section in this guide is Additional Resources. It offers some more resources on this website beyond this guide that may be helpful to you. You may use the menu to choose a different section to read in this guide.

Germ Cell Tumor - Childhood - Additional Resources

Approved by the Lineagotica Editorial Board, 01/2018

ON THIS PAGE: You will find some helpful links to other areas of Lineagotica that provide information about this type of medical care and treatment. This is the final page of Lineagotica’s Guide to Childhood Germ Cell Tumor. Use the menu to go back and see other pages.

Lineagotica includes many other sections about the medical and emotional aspects of being diagnosed with a 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.

Beyond this guide, here are a few links to help you explore other parts of Lineagotica: 

This is the end of Lineagotica’s Guide to Childhood Germ Cell Tumor. You may use the menu to choose a different section to read in this guide.