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Childhood Cancer - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

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 Cancer. Use the menu to see other pages. Think of that menu as a roadmap for this complete guide.

Cancer is uncommon in children. Most cancers (99%) develop in adults, and it is most common in older adults. About 1 out of every 3 adults will develop cancer during his or her lifetime, while about 1 in 285 children will develop cancer before the age of 20.

At the same time, there is a lot of research going on to discover new treatments for childhood cancer. This research has greatly improved the overall survival rate for children with cancer, which is now more than 80%.

What is childhood cancer?

Cancer in children can occur anywhere in the body, including the blood and lymph node system, brain and spinal cord (central nervous system; CNS), kidneys, and other organs and tissues.

Cancer begins when healthy cells change and grow out of control. In most types of cancer, these cells form a mass called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread to distant parts of the body.

In leukemia, a cancer of the blood that starts in the bone marrow, these abnormal cells very rarely form a solid tumor. Instead these cells crowd out other types of cells in the bone marrow. This prevents the production of:

  • Normal red blood cells.  Cells that carry oxygen to tissues.

  • White blood cells. Cells that fight infection.

  • Platelets. The part of the blood needed for clotting.

Most of the time, there is no known cause for childhood cancers. Childhood cancers may behave very differently from adult cancers, even when they start in the same part of the body.

Types of childhood cancer

Childhood cancer is a general term used to describe a range of cancer types and noncancerous tumors found in children. Childhood cancer may also be called pediatric cancer. Below are the most common types of cancer in children under 15 years old:

Cancer in teenagers and young adults

There is an increasing amount of research regarding cancer in children diagnosed after the age of 14. As these children are starting to enter young adulthood, they may have unique medical, social, and emotional needs that are different from younger children with cancer. They are part of a group often called adolescents and young adults (AYA).

Most often, teenagers and young adults with cancer should be treated at a pediatric oncology center. Ideally, they should be treated at a center where medical oncologists, who are doctors who treat cancer, and pediatric oncologists, who are doctors who treat children with cancer, work together to plan treatment. This will ensure that they receive the newest treatments and are cared for by a team of doctors who are familiar with these diseases.

This is especially important for teenagers who have lymphoma, leukemia, or bone tumors. Treatment by specialists familiar with these diseases has been shown to improve survival.

Within the AYA group, there are also patients who have types of cancer most commonly found in adults, such as melanoma, testicular cancer, or ovarian cancer. Teenagers with these cancers may receive treatments that are similar to adults, but they also need age-appropriate support for their social and emotional needs. In either the pediatric or adult care centers, age-appropriate information and support is very important for children and teens.

Below are the most common types of cancer in teenagers, ages 15 to 19:

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:

  • ASCO Answers Fact Sheets: Read 1-page fact sheets that offers an introduction for several types of childhood cancer listed above. Each fact sheet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Videos: View a short video led by an ASCO expert in childhood cancer and adolescents and young adults with cancer that provides basic information and areas of research. In addition, the Moving Forward series, in collaboration with The LIVESTRONG Foundation, provides perspectives from both doctors and survivors on topics often faced by young adults living with cancer.

Statistics adapted from the American Cancer Society's publication, Cancer Facts and Figures 2017.

The next section in this guide is Statistics. It helps explain the number of people under age 20 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.  

Childhood Cancer - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

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

In general, cancer in children and teenagers is uncommon, accounting for less than 1% of all cancer cases in the United States. This year, an estimated 10,270 children younger than 15 and about 5,000 adolescents aged 15 to 19 will be diagnosed with cancer in the United States.

Most children and teenagers diagnosed with cancer can be treated successfully. Since 1969, the number of deaths from childhood cancer has decreased steadily by 66%. However, cancer remains the second leading cause of death in children 1 to 14 years of age, after accidents.

It is estimated that 1,190 deaths from cancer will occur this year in children in this age group and 600 deaths from cancer in teens aged 15 to 19.

As explained in the Introduction, there are several types of childhood cancer, and survival rates are different for each. The 5-year survival rate tells you what percent of children live at least 5 years after the cancer is found. Percent means how many out of 100. The general 5-year survival rate for childhood cancer is about 83%.

It is important to remember that statistics on the survival rates for children and teenagers with cancer are an estimate. The estimate comes from annual data based on children and teenagers with cancer in the United States. Also, experts measure the survival statistics every 5 years. So the estimate may not show the results of better diagnosis or treatment available for less than 5 years. People should talk with their child’s doctor if they have questions about this information. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society's (ACS) publication, Cancer Facts and Figures 2017, and the ACS website.

The next section in this guide is Risk Factors and Prevention. 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.

Childhood Cancer - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

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

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do.

Doctors and researchers don’t know what causes most childhood cancers. A small percentage of cancers can be linked to the genetic disorder Down syndrome, other inherited genetic abnormalities, and previous radiation treatment. Environmental causes, such as exposure to infectious and toxic substances, are unlikely to cause childhood cancer.

To help doctors learn more about risk factors, the Childhood Cancer Research Network, coordinated by the Children's Oncology Group, is a North American childhood cancer registry. Once registered with the network, patients and families may be asked if doctors and researchers can contact them in the future to collect information for studies on genetic and environmental factors that may be connected to the development of childhood cancers; research continues in this area.

Because specific causes have not been found for each individual type of childhood cancer, the way to prevent childhood cancer is still unknown.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems this disease can cause. You may use the menu to choose a different section to read in this guide

Childhood Cancer - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

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

Cancer can be hard to detect in children. Children with cancer may experience the following symptoms or signs. Sometimes, children with cancer do not show any of these changes. Or, the cause of a symptom may be a different medical condition that is not cancer.

Many of the symptoms can be described using an acronym provided by The Pediatric Oncology Resource Center.

  • Continued, unexplained weight loss
  • Headaches, often with early morning vomiting
  • Increased swelling or persistent pain in the bones, joints, back, or legs
  • Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
  • Development of excessive bruising, bleeding, or rash
  • Constant, frequent, or persistent infections
  • A whitish color behind the pupil
  • Nausea that persists or vomiting without nausea
  • Constant tiredness or noticeable paleness
  • Eye or vision changes that occur suddenly and persist
  • Recurring or persistent fevers of unknown origin

If you are concerned about any changes, 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 cancer is diagnosed, relieving symptoms is an important part of cancer 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 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 a different section to read in this guide.  

Childhood Cancer - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

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, cancer. They also do tests to learn if cancer 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 cancer 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 cancer, 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 childhood cancer. Your child’s doctor may consider these factors when choosing a diagnostic test:

  • The type of cancer suspected

  • Your child’s signs and symptoms

  • Your child’s age and medical condition

  • The results of earlier medical tests

Not all tests listed below will be used for every person. If possible, it is important to have tests done in a pediatric specialty center where they can be supervised by pediatric specialists. In addition to a physical examination, the following tests may be used to diagnose childhood cancer:

  • Blood tests. Routine blood tests measure the number of different types of cells in a person’s blood. Levels of certain cells that are too high or too low can indicate the presence of certain types of cancer.

  • Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but except for certain types of brain tumors, only a biopsy can make a definite diagnosis. Biopsies can be guided by imaging to make the procedure accurate and precise. The type of biopsy performed depends on the location of the cancer. The sample removed during the biopsy is analyzed by a pathologist. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

  • Bone marrow aspiration and biopsy. These 2 procedures are similar and often done at the same time to examine the bone marrow, the spongy, fatty tissue found inside larger bones. Bone marrow has both a solid and a liquid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle.

    A pathologist then studies the samples(s). A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. The skin in that area is usually numbed with medication beforehand. Other medications may also be used to block the awareness of pain (anesthesia) or calm or relax your child (sedation).

  • Lumbar puncture (spinal tap). A lumbar puncture is a procedure in which a health care provider uses a needle to take a sample of cerebral spinal fluid (CSF) to look for cancer cells, blood, or tumor markers. Tumor markers are substances found in higher than normal amounts in the blood, urine, or body tissues of people with certain kinds of cancer. CSF is the fluid that flows around the brain and the spinal cord. Patients are generally given an anesthetic to numb the lower back before the procedure. Other medications may also be used to block the awareness of pain (anesthesia) or calm or relax your child (sedation).

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

  • Computed tomography (CT or CAT) scan. A CT scan creates a 3-dimensional (“3-D”) picture of the inside of the body using x-rays taken from different angles. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also 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.

    When possible, it is best to have this test done in a pediatric specialty center where they can be supervised by pediatric radiologists. These centers are aware of the potential risks of radiation exposure from a CT scan.

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

  • Positron emission tomography (PET) or PET-CT scan. A PET scan is usually combined with a CT scan (see above), called a PET-CT scan. However, you may hear your doctor refer to this procedure just as a PET scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radioactive sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body.

  • Scans or radioisotope studies. In these procedures, a material with a small amount of radioactive substance (called a tracer) is injected into the body and then followed with a special camera or x-ray to see where the material goes. These studies can find abnormalities in the liver, brain, bones, kidneys, and other organs.

Many of these tests may be repeated during and after treatment to determine how well the treatment is working. In addition, review tips and guidance on how to prepare your child for medical procedures.

After diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is cancer, these results also help the doctor categorize or describe the cancer; this is called staging.

The next section in this guide is Treatment Options. You may use the menu on the side of your screen to choose a different section to read in this guide.

Childhood Cancer - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

ON THIS PAGE: You will learn about the different treatments doctors use for children with cancer. Use the menu to see other pages.

In general, cancer in children 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’s 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 cancer should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric hematologist-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 childhood cancer are listed below. Treatment options and recommendations depend on several factors, including the type and stage of cancer, 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 goals of each treatment and what your child can expect while receiving the treatment. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor, either cancerous or noncancerous, and some surrounding healthy tissue during an operation. Many children with a tumor will need surgery at some point as a part of their treatment. A surgical oncologist is a doctor who specializes in treating a tumor using surgery.

The goal of surgery is to remove the entire tumor and the margin (tissue around the tumor), leaving a negative margin, meaning no cancer in the healthy tissue. For most childhood tumors, there are microscopic tumor cells left after surgery. Doctors are then likely to recommend chemotherapy, radiation therapy, or other treatments.

Side effects of surgery depend on the location and type of the tumor and whether it has metastasized.

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

Chemotherapy

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

Systemic chemotherapy 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, muscle, spinal fluid or under the skin using a needle, or in a pill or capsule that is swallowed orally.

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.

The side effects of chemotherapy depend on the individual and the drug and 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 cancer 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 child’s prescriptions by using searchable drug databases.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles such as photons to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. Because healthy organs and tissues in the radiation field are at risk for damage and second cancers, especially in young children, doctors avoid using radiation therapy whenever possible.

The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy.

A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.

Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about the basics of radiation therapy.

Immunotherapy

Immunotherapy, also called biologic therapy, is designed to boost the body’s natural defenses to fight the cancer. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. Examples of immunotherapy include cancer vaccines, monoclonal antibodies, and interferons.

Different types of immunotherapy can cause different side effects. Talk with your child’s doctor about possible side effects for the immunotherapy recommended. Learn more about the basics of immunotherapy.

Stem cell transplantation/bone marrow transplantation

A stem cell transplant is a medical procedure in which bone marrow that contains cancer is replaced by highly specialized cells, called hematopoietic stem cells that develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant, because it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

Before recommending transplantation, doctors will talk with the patient and family about the risks of this treatment and consider several other factors, such as the type of cancer, results of any previous treatment, and patient’s age and general health.

There are 2 types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO uses the patient’s own stem cells. In both types, the goal is to destroy all of the cancer cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replacement blood stem cells to create healthy bone marrow.

Side effects depend on the type of transplant, your general health, and other factors. Learn more about the basics of stem cell and bone marrow transplantation.

Getting care for symptoms and side effects

Cancer and its treatment often cause side effects. In addition to treatments intended to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes taking care of the patient’s and family’s 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 cancer treatment process. People often receive treatment for the cancer and at the same time that they treatment to ease side effects. In fact, patients who receive both 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, surgery, or radiation therapy. 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 the specific treatment plan and palliative care options. During and after treatment, be sure to tell your child’s 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 the chance of recurrence

A remission is when cancer 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’s important to talk with your child’s doctor about the possibility of the cancer returning. Understanding the risk of recurrence and the treatment options may help patients and their families feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence

If the cancer does return after the original treatment, it is called recurrent disease. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place in the body (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 surgery, chemotherapy, and radiation therapy, but they may be used in a different combination or given on a different schedule. Your child’s doctor may suggest clinical trials that are studying new ways to treat this type of recurrent cancer. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

Patients and their families with recurrent cancer often experience emotions such as disbelief or fear. Families are encouraged to talk with their child’s health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment doesn’t work

Although treatment is successful for the majority of children with cancer, sometimes it is not. If a child’s cancer cannot be cured or controlled, this is called advanced or terminal cancer. This diagnosis is stressful, and advanced cancer 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 an extremely important part of end-of-life care. Learn more about caring for a terminally ill child and advanced cancer 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 and it offers more information about research studies that are focused on finding better ways to care for people with cancer. You may use the menu to choose a different section to read in this guide.  

Childhood Cancer - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

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 cancer. 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 are focused 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. Families 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 childhood cancers.

Deciding to join a clinical trial

Parents and children decide to participate in clinical trials for many reasons. For some children, a clinical trial is the best treatment option available. Because standard treatments are not perfect, parents and children are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other people volunteer for clinical trials because they know that these studies are a way to continue the progress in treating childhood cancer. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with cancer.

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 can 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 parents of patients participating in a clinical trial talk with their child’s 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 cancer. For specific topics being studied for childhood cancer, learn more in the Latest Research section.

Cancer.Net 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 cancer.

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 and it explains areas of scientific research currently going on for this type of cancer. You may use the menu to choose a different section to read in this guide.

Childhood Cancer - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

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

Doctors are working to learn more about childhood cancer, ways to prevent it, how to best treat it, and how to provide the best care to children 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.

  • Advances in treatment and follow-up care. The Children’s Oncology Group conducts large clinical trials for most types of pediatric cancer. It also conducts studies on quality of life and late effects of cancer after successful treatment.

    The Childhood Cancer Survivor Study conducts long-term, follow-up studies of people who were treated many years ago to determine the late effects of childhood cancer and its treatment, so new treatments can be developed to avoid serious side effects.

    Other groups, including the Pediatric Brain Tumor Consortium and the New Approaches to Neuroblastoma Therapy Consortium, perform studies of new drugs for specific types of cancer. These groups are sponsored by the National Cancer Institute. The National Institute of Health clinical center has pediatric clinical trials for children with cancer.

  • Reducing a child’s exposure to radiation. To reduce exposure to radiation therapy, doctors may use chemotherapy with a combination of drugs after surgery or use new drug combinations. Researchers are also investigating new techniques such as proton therapy that more precisely focus radiation treatment at the tumor and not the surrounding healthy tissue.

  • Palliative care and survivorship care. Clinical trials are underway to find better ways of reducing other symptoms and side effects of current childhood cancer treatments in order to improve patients’ comfort and quality of life during treatment and into adulthood. For example, drugs called filgrastim (Neupogen) and pegfilgrastim (Neulasta) may help patients produce more white blood cells after radiation treatment and chemotherapy.

    Doctors are also studying chemoprotective drugs that may help protect the body from the harmful effects of chemotherapy, especially mucositis (mouth sores). Additionally, this area of research includes studies in cardioprotection (protecting the heart and cardiovascular system from chemotherapy) and otoprotection (protecting against damage to the ear).

Looking for More About Latest Research?

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

The next section in this guide is Coping with Treatment and 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.

Childhood Cancer - Coping With Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

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 cancer 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 cancer 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 cancer 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 childhood cancer are described within the Treatment Options section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your child’s physical health depend on several factors, including the cancer’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 cancer 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

Cancer 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 child with cancer. 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 cancer, 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 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 and it explains the importance of checkups after cancer treatment is finished. You may use the menu to choose a different section to read in this guide.

Childhood Cancer - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

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. To see other pages, use the menu.

Care for children diagnosed with cancer doesn’t end when active treatment has finished. Your child’s health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for childhood cancer 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.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Cancer recurs because small areas of cancer 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. Testing recommendations depend on several factors, including the type and stage of cancer 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 your child 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 of childhood cancer

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, emotional problems such as anxiety, depression, and cognitive (memory, thinking, and attention) problems, and learning difficulties.

Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. 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 cancer 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 cancer treatment your child received and develop a survivorship care plan once 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 cancer, 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 cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with him or her, and with all future health care providers. Details about the specific cancer 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 and it describes how to cope with challenges in everyday life after a cancer diagnosis. You may use the menu to choose a different section to read in this guide.

Childhood Cancer - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s cancer diagnosis. Use the menu to see other pages.

What is survivorship?

The word “survivorship” means different things to different people, but it often describes the process of 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 cancer 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 cancer 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 cancer 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, and

  • 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.

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 cancer, 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 cancer 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 may be a strong motivator to make positive lifestyle changes, often for the family as a whole.

Children who have had cancer 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 having 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. Cancer 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.

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 cancer survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net 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 helps people 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.

  • Cancer.Net 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 cancer care team. You may use the menu to choose a different section to read in this guide.  

Childhood Cancer - Questions to Ask the Health Care Team

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

ON THIS PAGE: You will find some questions to ask your child’s doctor or other members of the 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 your child's health care team is important to make informed decisions about their health care. These suggested questions are a starting point to help you learn more about your child’s cancer 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.

Questions to ask after getting a diagnosis

  • What type of cancer does my child have

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

  • What stage is the cancer? What does this mean?

Questions to ask about choosing a treatment and managing side effects

  • What are my child’s treatment options?

  • What clinical trials are open to my child? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

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

  • What are the possible side effects of each 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 he or she be able to go to school and perform his or her usual activities?

  • Will the treatment affect my child’s normal growth and development?

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

  • If I’m worried about managing the costs related to my child’s cancer care, who can help me?

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

  • Whom should we call with questions or problems?

  • Is there anything else I should be asking?

Questions to ask about having surgery

  • What type of surgery will my child have? Will lymph nodes be removed?

  • How long will the operation take?

  • How long will my child be in the hospital?

  • Can you describe what my child’s recovery from surgery will be like?

  • Will my child have scars?

  • What are the possible long-term effects of having this surgery?

Questions to ask about having other treatments, such as radiation therapy, chemotherapy, immunotherapy, or stem cell transplantation/bone marrow transplantation?

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • What side effects can my child expect during treatment?

  • What are the possible long-term effects of having this treatment?

  • What can be done to relieve the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the cancer 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 me/my child? To my family? 

 The next section in this guide is Additional Resources, and 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.  

Childhood Cancer - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2017

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Childhood Cancer. Use the menu to go back and see other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, 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 Cancer.Net:

This is the end of Cancer.Net’s Guide to Childhood Cancer. You may use the menu to choose a different section to read in this guide.