Childhood Cancer - Introduction

Approved by the Cancer.Net Editorial Board , 01/2022

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 entire 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 their 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 cancers. 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 systems, brain and spinal cord (central nervous system, or CNS), kidneys, and other organs and tissues.

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.

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. Malignant tumors also usually grow rapidly, while benign tumors generally grow slowly.

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.

Types of childhood cancer

"Childhood cancer," also called pediatric cancer, is a general term used to describe a range of cancer types found in children. Below are the most common types of cancer diagnosed in children under age 15:

  • Leukemia (accounts for about 28% of childhood cancer cases)

    • Acute lymphoblastic leukemia (ALL)

    • Acute myeloid leukemia (AML)

  • Brain and spinal cord tumors (27%), also called central nervous system (CNS) tumors

    • Glial tumors

      • Astrocytoma

      • Oligodendroglioma

      • Ependymoma

      • Choroid plexus carcinoma

      • Oligoastrocytoma

      • Glioblastoma

    • Mixed glial neuronal tumors

      • Ganglioglioma

      • Desmoplastic infantile ganglioglioma

      • Pleomorphioc xanthoastrocytoma

      • Anaplastic ganglioglioma

    • Neural tumors

      • Gangliocytoma

      • Neurocytoma

    • Embryonal tumors

      • Medulloblastoma

      • Medulloepithelioma

    • Ependymoblastoma

      • Atypical Teratoid/Rhabdoid tumor

    • Pineal tumors

      • Pineocytoma

  • Neuroblastoma (6%), a tumor of immature nerve cells. The tumor often starts in the adrenal glands, which are located on top of the kidneys and are part of the body’s endocrine (hormonal) system.

  • Non-Hodgkin lymphoma (6%) and Hodgkin lymphoma (3%), cancers that begin in the lymph system

  • Wilms tumor (5%), a type of kidney tumor

  • Rhabdomyosarcoma (3%), a type of tumor that most commonly begins in the striated skeletal muscles. Non-rhabdomyosarcoma soft tissue sarcomas can also occur in other parts of the body.

  • Germ cell tumors (3%), rare tumors that begin in the testicles of boys or ovaries of girls. Rarely, these tumors can begin in other places in the body, including the brain.

  • Retinoblastoma (2%), a type of eye tumor

  • Osteosarcoma (2%) and Ewing sarcoma (1%), tumors that usually begin in or near the bone

  • Pleuropulmonary blastoma , a rare kind of lung cancer

  • Hepatoblastoma and hepatocellular carcinoma (1%), types of liver tumors

Cancer in teenagers and young adults

There is an increasing amount of research regarding cancer in children diagnosed after the age of 14. Since 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 both medical oncologists, who are doctors who treat cancer in adults, and pediatric oncologists, who are doctors who treat cancer in children, work together to plan treatment. This collaboration will ensure that they receive the newest treatments and are cared for by a team of doctors familiar with these diseases. Collaboration is especially important for teenagers who have lymphoma, leukemia, or a bone tumor. 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 more 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. Talk with your health care team about what support programs are available.

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

  • Central nervous system (CNS) tumors (accounts for about 21% of cancer cases in teenagers)

  • Hodgkin lymphoma (12%)

  • Thyroid cancer (11%)

  • Germ cell tumors , including testicular cancer (8%) and ovarian cancer (2%)

  • Non-Hodgkin lymphoma (7%)

  • Soft tissue sarcoma (7%)

  • Acute lymphoblastic leukemia (ALL) (6%)

  • Bone tumors (5%), including osteosarcoma and Ewing sarcoma

  • Acute myeloid leukemia (AML) (4%)

  • Melanoma (3%)

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:

  • Cancer.Net Patient Education Videos: View the Moving Forward series, which in collaboration with the Livestrong Foundation provides perspectives from both doctors and survivors on topics often faced by young adults living with cancer.

The next section in this guide is Statistics . It helps explain the number of people under age 20 who are diagnosed with cancer and general survival rates. Use the menu to choose a different section to read in this guide.

Childhood Cancer - Statistics

Approved by the Cancer.Net Editorial Board , 02/2023

ON THIS PAGE: You will find information about the estimated number of children and teens who will be diagnosed with cancer each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with cancer are the same. Use the menu to see other pages.

Every person is different, with different factors influencing their risk of being diagnosed with this cancer and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for your child individually. The original sources for these statistics are provided at the bottom of this page.

How many children and teens are diagnosed with childhood cancer?

In general, cancer in children and teens is uncommon.

In 2023, an estimated 9,910 children younger than 15 and about 5,280 teens ages 15 to 19 in the United States will be diagnosed with cancer.

In children under 15, leukemia makes up 28% of all childhood cancers diagnosed. The next most common type of childhood cancer is brain cancer (26%), followed by lymphoma (12%).

In teens ages 15 to 19, brain cancer (21%), lymphoma (19%), and leukemia (13%) are the most commonly diagnosed cancers. Some cancers that are often found in adults are also common in teens. For example, thyroid cancer makes up 12% of cancer cases in teens, while melanoma makes up 3% of cases in this age group.

Rates of cancer in children and teens slowly increased since 1975, but those rates stabilized between 2010 and 2019. However, rates in teens continue to increase by around 1% each year. Most children and teens diagnosed with cancer can be treated successfully. Between 1970 and 2020, the number of deaths from cancer in children and teens decreased by more than 50%. This is due to increased participation in clinical trials and advances in treatment.

Cancer is the top disease-related cause of death for children and teens. After accidents, cancer remains the second leading cause of death in children under age 15. Cancer is also the fourth leading cause of death in teens ages 15 to 19, after accidents, suicide, and homicide.

It is estimated that 1,040 deaths from cancer will occur in the United States this year in children younger than 15. An estimated 550 deaths from cancer will occur in teens ages 15 to 19.

What is the survival rate for childhood cancer?

There are different types of statistics that can help doctors evaluate a person’s chance of recovery from childhood cancer. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having cancer may affect life expectancy. Relative survival rate looks at how likely people with childhood cancer are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this cancer.

Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.

It is important to remember that statistics on the survival rates for people with childhood cancer are only an estimate. They cannot tell an individual person if cancer will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.

In the mid-1970s, the general 5-year relative survival rate was 58% for children under 15 and 68% for teens ages 15 to 19. Today, thanks to major treatment advances and participation in clinical trials , the 5-year relative survival rate is 85% for children and 86% for teens. This rate is slightly higher for teen girls at 90%, compared to 83% for teen boys.

As explained in the Introduction , there are several types of childhood cancer, and survival rates are different for each. The survival rates vary based on several factors. These include the stage of cancer, a person’s age and general health, and how well the treatment plan works.

The high rate of survival in teens ages 15 to 19 is largely due to a more than 99% overall 5-year relative survival rate for thyroid cancer and a 98% overall 5-year relative survival rate for Hodgkin lymphoma. For many other cancers, teens have lower survival rates than children under 15.

Visit the individual section for a specific type of childhood cancer for more information about survival statistics (see the Introduction for a complete list).

Experts measure relative survival rate statistics for childhood cancer every 5 years. This means the estimate may not reflect the results of advancements in how childhood cancer is diagnosed or treated from the last 5 years. Talk with your child’s doctor if you have any questions about this information. Learn more about understanding statistics .

Statistics adapted from the American Cancer Society's (ACS) publications, Cancer Facts & Figures 2023, and the ACS website. Additional source was Seigel R, et al.: Cancer Statistics 2023. CA: A Cancer Journal for Clinicians . 2023 Jan; 73(1):17–48. doi/full/10.3322/caac.21763 . (All sources accessed February 2023.)

The next section in this guide is Risk Factors . It describes the factors that may increase the chance of developing childhood cancer. Use the menu to choose a different section to read in this guide.

Childhood Cancer - Risk Factors

Approved by the Cancer.Net Editorial Board , 01/2022

ON THIS PAGE: You will find out more about the factors that may increase the chance of developing childhood 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 a genetic disorder such as Down syndrome, other inherited genetic abnormalities , or prior radiation exposure. 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 Children's Oncology Group (COG) coordinates a large childhood cancer registry. (Please note this link takes you to a separate website.) 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 childhood cancer, ways to prevent childhood cancer are still unknown.

The next section in this guide is Symptoms and Signs . It explains what changes or medical problems childhood cancer can cause. Use the menu to choose a different section to read in this guide.

Childhood Cancer - Symptoms and Signs

Approved by the Cancer.Net Editorial Board , 01/2022

ON THIS PAGE: You will find out more about changes 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 a variety of the signs or symptoms described below, many of which are similar to common childhood illnesses. Symptoms are changes that you can feel in your body. Signs are changes in something measured, like by taking your blood pressure or doing a lab test. Together, symptoms and signs can help describe a medical problem. Sometimes, children with cancer do not have any of the symptoms and signs described below. Or, the cause of a symptom or sign may be a medical condition that is not cancer.

Many of the symptoms can be described using an acronym (CHILDCANCER) provided by The Pediatric Oncology Resource Center . (Please note this link takes you to a separate website.)

  • C ontinued, unexplained weight loss

  • H eadaches, often with early morning vomiting

  • I ncreased swelling or persistent pain in the bones, joints, back, or legs

  • L ump or mass, especially in the abdomen, neck, chest, pelvis, or armpits

  • D evelopment of excessive bruising, bleeding, or rash

  • C onstant, frequent, or persistent infections

  • A whitish color behind the pupil

  • N ausea that persists or vomiting without nausea

  • C onstant tiredness or noticeable paleness

  • E ye or vision changes that occur suddenly and persist

  • R ecurring or persistent fevers of unknown origin

If you are concerned about any changes in your child, please talk with your family 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. Managing symptoms may also be called "palliative care" or "supportive care." It is often started soon after diagnosis and continued throughout treatment. 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. Use the menu to choose a different section to read in this guide.

Childhood Cancer - Diagnosis

Approved by the Cancer.Net Editorial Board , 01/2022

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 the cancer has spread, it is called metastasis. Doctors may also do tests to learn which treatments might work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know if an area of the body has cancer. In a biopsy, the doctor takes a small sample of tumor tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

How childhood cancer is diagnosed

There are many tests used 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 general health

  • The results of earlier medical tests

Not all tests described here will be used for every person. If possible, it is important to have tests done in a pediatric specialty center where tests can be supervised by pediatric specialists. These are medical professionals who specialize in diagnosing and treating younger patients. 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 only a biopsy can make a definite diagnosis, except for certain types of brain tumors. A biopsy can be guided by imaging tests (such as a computed tomography (CT) or magnetic resonance imaging (MRI) scan; see below) to make the procedure accurate and precise. The type of biopsy performed depends on the location of the tumor and part of the body involved. 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, which is 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 in a lab. A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located by the hip. Doctors generally give a type of medication called anesthesia beforehand to numb the area. Anesthesia is medication that blocks the awareness of pain.

  • Lumbar puncture (spinal tap). A lumbar puncture is a procedure in which a needle is used to take a sample of cerebral spinal fluid (CSF) to look for cancer cells 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 often given an anesthetic to numb the lower back before the procedure or other medications to calm or relax your child (sedation).

  • Ultrasound. An ultrasound uses sound waves to create a picture of the internal organs. Patients are usually awake during an ultrasound.

  • Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer then combines these pictures into a detailed, 3-dimensional image 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 or liquid to swallow. When possible, it is best to have this test done in a pediatric specialty center where it 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 or liquid 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. However, the amount of radiation in the substance is too low to be harmful to patients. 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 the child's treatment period to find out how well the treatment is working. Review tips and guidance on how to prepare your child for medical procedures.

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

Information about the cancer from diagnostic testing will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment . Use the menu to choose a different section to read in this guide.

Childhood Cancer - Types of Treatment

Approved by the Cancer.Net Editorial Board , 01/2022

ON THIS PAGE: You will learn about the different types of 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 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 treatment known based on previous clinical trials. Clinical trials may test such approaches as a new drug, a new combination of existing 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 oncologist or 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.

How childhood cancer is treated

In many cases, a team of doctors works with a child and the family to provide care. This is called a multidisciplinary team . Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, dietitians, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Treatment options and recommendations depend on several factors, including the type of cancer, possible side effects, and the patient’s preferences and overall health. Take time to learn about all of your child’s treatment options and be sure to ask questions about things that are unclear. Talk with your child’s doctor about the goals of each treatment and what your child can expect while receiving the treatment. These types of talks are called "shared decision-making." Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your child's care. Shared decision-making is particularly important for childhood cancer because there are different treatment options. Learn more about making treatment decisions .

The common types of treatments used for childhood cancer are described below. Your child's care plan also includes treatment for symptoms and side effects, an important part of cancer care.

  • Surgery

  • Chemotherapy

  • Immunotherapy

  • Radiation therapy

  • Bone marrow transplantation/stem cell transplantation

  • Physical, emotional, and social effects of cancer

  • Remission and the chance of recurrence

  • If treatment does not work

Surgery

Surgery is the removal of the tumor, either cancerous or noncancerous, and a small amount of some surrounding healthy tissue during an operation. Many children with a tumor will need surgery at some point as a part of their treatment. Surgical oncologists, pediatric surgeons, and neurosurgeons are doctors who specialize in treating a tumor using surgery.

The goal of surgery is to remove the entire tumor and the margin (tissue around the tumor) and to leave a negative margin, which means no visible tumor left behind in the body's tissue. For most childhood tumors, there is still a significant risk of microscopic tumor cells being left after surgery. Doctors are then likely to recommend chemotherapy, radiation therapy, or other treatments.

Side effects of surgery may depend on the location of the tumor, the age of your child, the type of tumor, and whether the tumor has metastasized, meaning it has spread to other parts of the body. Before surgery, talk with your child’s health care team about the possible side effects from the specific surgery your child may experience and how those side effects can be managed or relieved. Learn more about the basics of cancer surgery .

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Therapies using medication

The treatment plan may include medications to destroy cancer cells. Medication may be given through the bloodstream to reach cancer cells throughout the body. When a drug is given this way, it is called systemic therapy. Medication may also be given locally, which is when the medication is applied directly to the cancer or kept in a single part of the body. For children with cancer, this type of treatment is generally prescribed by a pediatric oncologist.

Medications are often given through an intravenous (IV) tube placed into a vein using a needle or as a pill or capsule that is swallowed (orally). Most children will have a special IV tube placed under the skin by a surgeon. This type of tube can safely remain in place for many months, to minimize discomfort for the child and reduce needle sticks with each course of treatment. If your child is given oral medications, be sure to ask your health care team about how to safely store and handle them.

The types of medications used for childhood cancer include:

  • Chemotherapy

  • Immunotherapy

Each of these therapies is discussed below in more detail. A person may receive 1 type of medication at a time or a combination of medications given at the same time. They can also be given as part of a treatment plan that includes surgery and/or radiation therapy.

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.

It is important to let your child's doctor know if they are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications, causing unwanted side effects or reduced effectiveness. Learn more about your child’s prescriptions by using searchable drug databases .

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells.

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time.

The side effects of chemotherapy depend on the individual drug and dose used but 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. Talk with your child's cancer care team about what side effects are likely with the chemotherapy being used, and how they will be managed. Learn more about the basics of chemotherapy .

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Immunotherapy

Immunotherapy uses the body's natural defenses to fight cancer by improving your immune system’s ability to attack cancer cells. Examples of immunotherapy include cancer vaccines, monoclonal antibodies, and interferons.

The newest immunotherapy being actively researched is the use of a patient's own T-cells (a type of blood cell) to fight cancer. These are called chimeric antigen receptor T-cells. This type of therapy is referred to as CAR T-cell therapy. In CAR T-cell therapy, some T cells are removed from a patient’s blood. Then, the cells are changed so they have specific proteins called receptors. The receptors allow the changed T cells to recognize the cancer cells. The changed T cells are then returned to the patient’s body. Once there, they seek out and destroy cancer cells. Currently, CAR T-cell therapy is only being used for certain leukemias that are difficult to treat and is only available at specialized centers. Your doctor can let you know whether this is an appropriate option for your child. Learn more about the basics of CAR T-cell therapy.

Different types of immunotherapy can cause different side effects. Common side effects include skin reactions, flu-like symptoms, diarrhea, and weight changes. Talk with your child’s doctor about possible side effects for the specific immunotherapy recommended. Learn more about the basics of immunotherapy .

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Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles such as photons or protons 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 often try to avoid or minimize the use of radiation therapy in this age group if possible.

The most common type of radiation treatment is called external-beam radiation, 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. Newer ways of delivering radiation are also being developed.

Be sure to talk with the radiation oncologist about the specific radiation therapy plan for your child. 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 depend on where the radiation therapy was given and may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. However, radiation to the brain may have long-term effects on the child's functioning at school. Children who have had brain radiation therapy should receive special testing to determine if they may benefit from extra services in school. Ask the health care team what side effects are possible and how they will be managed. Learn more about the basics of radiation therapy .

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Bone marrow transplantation/stem cell transplantation

A bone marrow transplant is a medical procedure in which bone marrow that contains cancer is replaced by highly specialized cells. These cells, called hematopoietic stem cells, develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. This procedure is also called a stem cell transplant or hematopoietic stem cell transplant.

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

There are 2 types of hematopoietic stem cell transplants depending on the source of the replacement stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells from another person, 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 and other factors. Learn more about the basics of stem cell and bone marrow transplantation .

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Physical, emotional, and social effects of cancer

Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative care or supportive care. It is an important part of your child’s care that is included along with treatments intended to slow, stop, or eliminate the cancer.

Palliative care focuses on improving how your child feels during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. It often works best when it is started right after a cancer diagnosis. People who receive palliative care during treatment for the cancer often have less severe side effects, better quality of life, and report that they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. Your child may also receive palliative treatments similar to those meant to get rid of the cancer, such as chemotherapy, surgery, or radiation therapy.

Before treatment begins, talk with your child’s doctor about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

During treatment, your child’s health care team may ask you to answer questions about your child’s symptoms and side effects and to describe each problem. Be sure to tell the health care team if your child is experiencing a problem. This helps treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative care in a separate section of this website.

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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 is 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 returns 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).

If a recurrence happens, a new cycle of testing will begin again to learn as much as possible about it. After this testing is done, your child’s doctor will talk with you about the treatment options. Often the treatment plan will include the treatments described above, such as 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 recurrent childhood cancer. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

Patients and their families dealing with recurrent cancer sometimes 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 with coping. Learn more about dealing with cancer recurrence .

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If treatment does not work

Although treatment is successful for many 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 health care team to express your family’s feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and families and is there to help.

Hospice care is designed to provide the best possible quality of life for people who are expected to live less than 6 months. Parents and guardians are encouraged to talk with the health care team about hospice options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Some children may be happier and more comfortable if they can attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is 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 a profound tragedy, and many families need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child .

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The next section in this guide is About Clinical Trials . It offers more information about research studies that are focused on finding better ways to care for children and teens with cancer. Use the menu to choose a different section to read in this guide.

Childhood Cancer - About Clinical Trials

Approved by the Cancer.Net Editorial Board , 01/2022

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are studied to see how well they work. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with cancer. To make scientific advances, doctors conduct research studies called clinical trials that involve volunteers. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in a clinical trial.

Clinical trials are used for all types of childhood cancer. Many focus on new treatments to learn if they are safe, effective, and possibly better than the existing treatments or standard of care. 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 the chance that the new treatment may not work better than the standard of care. 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, while others study ways to manage the late effects that may happen a long time after treatment. Talk with your child’s doctor about clinical trials for symptoms and side effects.

Deciding to join a clinical trial

Parents and children decide to participate in clinical trials for many reasons. For some, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Others volunteer for clinical trials because they know 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 and the costs of clinical trials differ by location and study. In some programs, some of the patient’s expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your child's treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials .

Sometimes people have concerns that their child may receive no treatment in a clinical trial by being given a placebo or a “sugar pill.” You and your child will always be told when a placebo is used in a study. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. Informed consent means that parents give permission for a younger child to participate in a clinical study and that a teenager gives their assent to participate. During informed consent, the doctor should:

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

  • List all of the known 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 person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

  • Describe the purposes of the clinical trial and what researchers are trying to learn.

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. Your child will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials.

People who participate in a clinical trial may stop participating at any time for any reason, personal or medical. The reasons may include that the new treatment is not working or there are serious side effects. Your child's doctors will continue to provide the best available treatment to your child regardless of whether you choose for your child to participate in a clinical trial or if you decided for your child to stop participating in the trial after initially enrolling.

Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that parents of children participating in a clinical trial talk with their child’s doctor and researchers about who will be providing their child's treatment and care during the clinical trial, after the clinical trial ends, and/or if they choose 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 more 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 .

In addition, you can find a free video-based educational program about cancer clinical trials located in another section of this website.

The next section in this guide is Latest Research . It explains areas of scientific research for childhood cancer. Use the menu to choose a different section to read in this guide.

Childhood Cancer - Latest Research

Approved by the Cancer.Net Editorial Board , 01/2022

ON THIS PAGE: You will read about the scientific research being done to learn more about childhood 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 childhood cancers. It also conducts studies on quality of life and late effects of cancer after successful treatment. The Childhood Cancer Survivor Study is a long-term, follow-up study of people who were treated many years ago to better understand 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 Institutes of Health Clinical Center has on-site pediatric clinical trials for children with cancer. (Please note these links take you to separate websites.)

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

  • Palliative care/supportive care and survivorship care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current childhood cancer treatments in order to improve 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 possible side 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 ears).

Looking for More About Latest Research?

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

  • To find clinical trials specific to your child’s diagnosis, talk with your child’s doctor or search online clinical trial databases .

  • Visit the Cancer.Net Blog to review recent cancer research or topics about coping with childhood cancer or cancer in adolescents and young adults .

  • Review an expert perspective on important childhood cancer survivorship questions.

  • Visit the website of Conquer Cancer, the ASCO Foundation , to find out how to help support cancer research. Please note that this link takes you to a different ASCO website.

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

Childhood Cancer - Coping With Treatment

Approved by the Cancer.Net Editorial Board , 01/2022

ON THIS PAGE: You will learn more about coping with the physical, emotional, social and financial effects of childhood cancer and its treatment. Use the menu to see other pages.

Every cancer treatment can cause side effects or changes to your child’s body and how the child may feel. For many reasons, people do not 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 child's health care team will work to prevent and relieve side effects. This part of cancer treatment is called palliative care or supportive care. It is an important part of your child’s treatment plan, regardless of age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for childhood cancer are described in the Types of Treatment 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 of treatment, the cumulative dose of systemic medications or radiation therapy, and your child’s general health.

It is important to discuss any new side effects or changes in existing side effects with your child's health care team. Providing this information helps them find ways to treat or manage the side effects so your child feels more comfortable and can potentially keep any side effects from worsening.

You may find it helpful to keep track of your child’s side effects so you are prepared to discuss any changes with the health care team. Learn more about why tracking side effects is helpful .

Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. Side effects that occur months or years after treatment are called late effects . Treating long-term side effects and late effects is an important part of care for childhood cancer survivors. Learn more by reading the Follow-Up Care section of this guide or talking with your child’s doctor.

Coping with emotional and social effects

Your family can have emotional and social effects after a cancer diagnosis. This may include dealing with a variety of emotions, such as anxiety, sadness, or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.

You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your family’s needs.

Coping with the costs of cancer care

Cancer treatment can be expensive and a 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.

Coping with barriers to care

Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health , such as where a person lives and whether they have access to food and health care. Cancer disparities more often negatively affect racial and ethnic minorities , people with fewer financial resources , sexual and gender minorities (LGBTQ+) , adolescent and young adult populations , older adults , and people who live in rural areas or other underserved communities .

If your child is having difficulty getting the care they need, talk with a member of the health care team or explore other resources that help support medically underserved people .

Talking with your child's 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?

  • When and who should we call about side effects?

Be sure to tell your child's health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, social, and financial effects of cancer.

Caring for a child with cancer

Family members and friends often play an important role in taking care of a child or teen 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

A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. Ask how much care your child may need at home and with daily tasks during and after treatment. Use this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print.

Learn more about caregiving or read the ASCO Answers Guide to Caring for a Loved One With Cancer in English or Spanish .

Looking for More on How to Track Side Effects?

Cancer.Net offers several resources to help you keep track of symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:

  • Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of your child's symptoms and side effects.

  • ASCO Answers Managing Pain: Get this 32-page booklet about the importance of pain relief that includes a pain tracking sheet to record how pain affects your child. The free booklet is available as a PDF, so it is easy to print.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression , constipation , diarrhea , rash , and immunotherapy side effects that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.

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

Childhood Cancer - Follow-Up Care

Approved by the Cancer.Net Editorial Board , 01/2022

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 does not end when active treatment has finished. Your child’s health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for 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.

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 as possible. Learn more about cancer rehabilitation.

Learn more about the importance of follow-up care .

Watching for recurrence

One goal of follow-up care is to check for recurrence, which means that the cancer has come back. 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 child's 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 first diagnosed and the treatment types given.

The anticipation before having a follow-up test or waiting for test results may add stress to your child or a family member. This is sometimes called "scanxiety." Learn more about how to cope with this type of stress .

Managing long-term and late side effects 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 after treatment has ended. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems, the child's future fertility, and second cancers, which is a new cancer that happens in someone who has had cancer before. They also include emotional problems, such as anxiety and depression, and problems with memory, thinking, attention, and learning.

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. Learn more about late effects of childhood cancer and of cancer in teens and young adults in separate sections of this website.

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 your child’s medical information. The doctor will help you create this. That way, as your child enters adulthood, they will have a clear, written history of the diagnosis, the treatments, 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 pediatrician, primary care 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 the health care team about your child’s ongoing medical care and any concerns you have about their future health.

If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with them 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 their lifetime.

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

Childhood Cancer - Survivorship

Approved by the Cancer.Net Editorial Board , 01/2022

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 complicated parts of the cancer experience because it is different for every child and 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, learning or school problems, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • 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 the health care team, individual counseling, or asking for assistance at the learning resource center of the place where your child received treatment.

Healthy living after cancer

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

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, limiting alcohol, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices .

It is important that your child has recommended medical checkups and tests (see Follow-Up Care ) to take care of their health.

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

The Children's Oncology Group also offers long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers . Please note this link takes you to a separate website.

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 .

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

  • ASCO Answers Guide to Cancer Survivorship: Get this 48-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print.

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

Childhood Cancer - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board , 01/2022

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 the health care team is important to make informed decisions about your child's health care. These suggested questions are a starting point to help you learn more about your child’s 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 the next appointment, or download Cancer.Net’s free mobile app for a digital list and other interactive tools to manage your child’s care. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

  • 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 they be able to go to school and perform their 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 in the future? If so, should my family talk with a fertility specialist before cancer treatment begins?

  • If I have questions or problems, who should I call?

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?

  • Who should I contact about any side effects my child experiences? And how soon?

  • 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, and immunotherapy)

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • Will my child receive this treatment at a hospital or clinic? Or will they take it at home?

  • What side effects can my child expect during treatment?

  • Who should I contact about any side effects my child experiences? And how soon?

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

  • What can be done to prevent or relieve the side effects?

Questions to ask about support during cancer

  • 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?

  • If I have questions or problems, who should I call?

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 my child received?

  • What follow-up tests will my child need, and how often will those tests be needed?

  • 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?

  • How can I find a doctor experienced in survivorship care to take care of my child during follow-up care?

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

Childhood Cancer - Additional Resources

Approved by the Cancer.Net Editorial Board , 01/2022

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 diagnosed and for their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Here are a few links to help you explore other parts of Cancer.Net:

  • Search for a cancer specialist in your local area using this free database of doctors from the American Society of Clinical Oncology.

  • Learn more about cancer in children and cancer in teens and young adults in dedicated sections of this website.

  • Learn what medical phrases and terms used in cancer care and treatment mean.

  • Read more about the first steps to take when your child has been diagnosed with cancer.

  • Find out more about clinical trials as a treatment option.

  • Get information about managing the financial costs of cancer care.

  • Learn more about coping with the emotions that cancer can bring, including those within a family or a relationship.

  • Find a national, not-for-profit advocacy organization that may offer additional information, services, and support for families coping with childhood cancer.

  • Explore what to do when your child finishes active treatment .

  • Download Cancer.Net Mobile , a free app that includes a symptom and side effect tracker, medication reminders, and other interactive resources.

  • To find a range of information and insights from different voices on timely cancer topics about childhood cancer or cancer in adolescents and young adults , visit the Cancer.Net Blog .

  • Watch Cancer.Net videos with ASCO experts explaining the basics of cancer treatment, side effects, survivorship, clinical trials, caregiving, and more.

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