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Neuroblastoma - Childhood - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

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 Neuroblastoma. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

Cancer begins when normal cells change and grow uncontrollably, forming a mass called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can spread to other parts of the body. A benign tumor means the tumor will not spread.

Neuroblastoma is a solid cancerous tumor that begins in the nerve cells outside the brain of infants and young children. It can start in the nerve tissue near the spine in the neck, chest, abdomen, or pelvis, but it most often begins in the adrenal glands. The adrenal glands are located on top of both kidneys and make hormones that help control body functions, such as heart rate and blood pressure.

Neuroblasts are immature nerve cells found in unborn babies. Normal neuroblasts mature into nerve cells or adrenal medulla cells, which are cells found in the center of the adrenal gland. Neuroblastoma forms when neuroblasts don’t mature properly.

Sometimes, babies are born with small clusters of neuroblasts that eventually mature into nerve cells and do not become cancer. A neuroblast that does not mature can continue to grow, forming a mass called a tumor.

Neuroblastoma develops most often in infants and children younger than five. It can form before the baby is born and can sometimes be found during a prenatal (before birth) ultrasound. Most often, however, neuroblastoma is found after the cancer has spread to other parts of the body, such as the lymph nodes (tiny, bean-shaped organs that help fight infection), liver, lungs, bones, and bone marrow (the spongy, red tissue in the inner part of large bones).

Looking for More of an Overview?

If you would like additional introductory information, explore these related items on Cancer.Net:

  • ASCO Answers Fact Sheet: Read a one-page fact sheet (available as a PDF) that offers an easy-to-print introduction for this type of cancer.
  • Cancer.Net Patient Education Video:  View a short video led by an ASCO expert in childhood cancer that provides basic information and areas of research.

To continue reading this guide, use the menu on the side of your screen to select another section.  

Neuroblastoma - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find information about how many people learn they have neuroblastoma each year and some general survival information. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

Neuroblastoma accounts for 6% of all childhood cancers in the United States, with about 700 children younger than 15 diagnosed each year. It is the third most common tumor in children and the most common cancer in babies younger than one.

The overall survival rate is the percentage of people who survive after the cancer is detected, excluding those who die from other diseases. It depends on many factors, particularly the risk grouping of the tumor. The five-year survival rate for children with low-risk and intermediate-risk neuroblastoma is higher than 95%. For children with high-risk neuroblastoma, the survival rate is 40% to 50%. (See Staging and Risk Grouping for information on risk groupings.)

Cancer survival statistics should be interpreted with caution. These estimates are based on data from thousands of children with this type of cancer, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with neuroblastoma. Because the survival statistics are measured in five-year intervals, they may not represent advances made in the treatment or diagnosis of this cancer. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society.

To continue reading this guide, use the menu on the side of your screen to select another section.  

Neuroblastoma - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of tumor. To see other pages, use the menu on the side of your screen.

For most types of cancer, a risk factor is anything that increases a person’s chance of developing cancer. Although risk factors can 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. For neuroblastoma, the term “risk factor” is more commonly used to describe the factors that are used to predict how the tumor will grow and how well treatment will work (see Stages).

Neuroblastoma occurs more often in boys than in girls. So far, no environmental factors have been shown to increase the risk of developing neuroblastoma. Rarely, more than one member of a family is diagnosed with neuroblastoma. Researchers have found inherited gene mutations (changes) that play a role in the development of neuroblastoma for children with a family history of the disease. Other genetic changes, called single-nucleotide polymorphisms or SNPs, may contribute to the development of neuroblastoma in children who do not have a family history.

Family history and genetic predisposition

Approximately 1% to 2% of children with neuroblastoma have a family history of the disease. Children with an inherited likelihood of neuroblastoma tend to develop the disease, on average, nine to thirteen months earlier than other children with neuroblastoma. In children who have a family history of neuroblastoma, the disease may occur in two or more organs.

Neuroblastoma tumors have been diagnosed in patients with congenital central hypoventilation syndrome (CCHS), a unique disorder of breathing control associated with Hirschsprung disease (HSCR). CCHS results from germline mutations (a mutation passed directly from parent to child) in the paired-like homeobox (PHOX) 2B gene.  Germline PHOX2B alterations are present in the tumors of people with neuroblastoma and with CCHS and/or Hirschsprung disease. Rare germline PHOX2B mutations have also been found in patients who are genetically predisposed to neuroblastoma.

Most of the time, when multiple members of a family have neuroblastoma, they have germline mutations in the anaplastic lymphoma kinase (ALK) gene. These mutations can be found in a blood sample. However, ALK mutations have also been found in DNA from tumors in some patients without a family history.

Neuroblastoma has also been diagnosed in several patients who are missing portions of chromosomes 1p and 11q that are thought to prevent tumor growth.

Genetic factors without a family history

The genetic factors that have a role in the development of neuroblastoma in patients who do not have a family history are not well understood.  Genome-wide association studies have identified a number of germline SNPs that are highly associated with neuroblastoma.  These include SNPs within or upstream of CASC15, FLJ44180, BARD1, LMO1, DUSP12, HSD17B12, DDX4/IL31RA, HACE1, and LIN28B genes along with a common copy number variation within NBPF23

A recent study has shown that rare germline variants in TP53 are also associated with neuroblastoma.  However, these variants account for only a small portion of the risk for developing neuroblastoma. For more from Cancer.Net, read about the genetics of cancer. Learn more about genetic studies here (please note, this link takes you to an outside website). 

To continue reading this guide, use the menu on the side of your screen to select another section.  

Neuroblastoma - Childhood - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

Children with neuroblastoma may experience the following symptoms or signs. Sometimes, children with neuroblastoma do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer.  

Many symptoms of neuroblastoma are caused by pressure from the tumor or bone pain if the cancer has spread to the bones. Pain may cause the child to limp, refuse to walk, or become unable to walk. Other symptoms include:

  • A lump or mass in the abdomen, chest, neck, or pelvis, often found by a parent when bathing the child
  • Skin lesions or nodules under the skin with blue or purple patches
  • Eyes that bulge out and dark circles under the eyes, if the cancer has spread behind the eyes
  • Changes in the eyes, such as black eyes, a droopy eyelid, a pupil that is constricted, vision problems, or changes in the color of the iris
  • Pain in the chest, difficulty breathing, or a persistent cough
  • Pain in the arms, legs, or other bones
  • Pain in the back or weakness, numbness, or paralysis of the legs (if the tumor has spread to the spinal cord)
  • Fever and anemia (low level of red blood cells) sometimes occur.
  • Neuroblastoma is one of the few cancers in children that releases hormones, causing symptoms such as constant diarrhea or high blood pressure.
  • Rarely, patients can have rotating movements of the eyes and sudden muscle jerks. These symptoms are likely from immune system problems caused by the disease.

If you are concerned about one or more of the symptoms or signs on this list, 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 find out the cause of the problem, called a diagnosis.

If neuroblastoma is diagnosed, relieving symptoms remains an important part of care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with the health care team about symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section helps explain what tests and scans may be needed to learn more about the cause of the symptoms. Use the menu on the side of your screen to select Diagnosis, or you can select another section, to continue reading this guide.

Neuroblastoma - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose cancer and find out if it has spread to another part of the body, called metastasis. Some tests may also determine which treatments may be the most effective. For most tumors, a biopsy is the only way to make a definitive diagnosis of cancer. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may be used to find out whether the cancer has spread. This list describes options for diagnosing this type of cancer, and not all tests listed will be used for every person. Your child’s doctor may consider these factors when choosing a diagnostic test:

  • Medical condition
  • Type of cancer suspected
  • Signs and symptoms
  • Previous test results

According to international criteria developed by the International Neuroblastoma Staging System Committee (INSS), diagnosing neuroblastoma depends on two factors:

  • Neuroblastoma in the bone marrow and higher than normal levels of one of the main chemicals produced by the nervous system, called catecholamine, in the urine
  • A tumor biopsy showing neuroblastoma cells

In addition to a physical examination, the following tests may be used to find out if a child has neuroblastoma:

Blood and urine tests. Complete blood counts (CBC) are tested to find out if the child has signs of anemia (low levels of iron in the blood). Liver and kidney function are tested, and urine is collected to learn if there are any tumor markers or other substances produced by a neuroblastoma tumor. A tumor marker is a substance found in higher than normal amounts in the blood, urine, or body tissues of people with certain kinds of cancer.

Normal nerve cells communicate with each other by releasing certain chemicals called neurotransmitters. Catecholamines are neurotransmitters. Eventually the body breaks down the catecholamine molecules into smaller pieces, called metabolites, which are then passed out of the body in the urine.

About 90% of the time, neuroblastoma cells make enough catecholamines to be found in blood or urine tests. The two catecholamine metabolites most often measured are:

  • Homovanillic acid (HVA)
  • Vanillylmandelic acid (VMA)

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. 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. The type of biopsy performed depends on the location of the tumor. If the doctor determines that the entire tumor can be removed during the biopsy, the whole tumor is removed at that time.

Molecular genetic studies. Tests of neuroblastoma cell DNA are used to find a change in the oncogene MYCN, a gene responsible for cell growth. More than one copy of the gene, called amplification, is associated with a tumor that grows and spreads quickly, making it more difficult to treat. A non-amplified MYCN gene is linked to less aggressive tumors, which grow and spread more slowly. Additional tests are done to find out if the tumor has changes in the numbers of whole chromosome or parts of chromosomes. A series of studies have shown that segmental chromosomal aberrations are associated with more aggressive disease, while whole chromosome gains are seen in tumors with more favorable outcome. DNA sequencing tests to find out if mutations of ALK are also commonly done. Sequencing studies have shown that a small subset of neuroblastoma tumors have gene mutations, and some of these mutations, like ALK, can be targeted with new drugs.

Bone marrow aspiration and biopsy. These two procedures are similar and often done at the same time to examine the bone marrow. 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. The sample(s) are then analyzed by a pathologist. 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, and other types of anesthesia (medication to block the awareness of pain) may be used.

Computed tomography (CT or CAT) scan. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. 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.

Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the brain and spinal column. 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. An MRI is better at showing tumors around the spine, and it is essential to look at a tumor that is near where nerves leave the spinal column, which can press on the spinal cord.

Bone scan. A bone scan uses a radioactive tracer to look at the inside of the bones. The tracer is injected into a patient’s vein. It collects in areas of the bone and is detected by a special camera. Healthy bone appears gray to the camera, and areas of injury, such as those caused by cancer, appear dark.

MIBG scan. MIBG stands for meta-iodobenzylguanidine. Neuroblastoma cells absorb this protein, and when it is linked to a small amount of radioactive iodine, it can be used to find neuroblastoma in the bone, bone marrow and other parts of the body. Because the child’s thyroid gland will also absorb radioactive iodine, regular iodine is taken by mouth for several days before the scan to protect the thyroid.

Positron emission tomography (PET) scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radioactive substance is injected into a patient’s body. This substance is absorbed mainly by organs and tissues 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. This test is usually performed for patients who have tumors that do not take up MIBG (see above).

After diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is neuroblastoma, these results also help the doctor describe neuroblastoma; this is called stages and risk grouping

The next section helps explain the different stages for this type of cancer. Use the menu on the side of your screen to select Stages, or you can select another section, to continue reading this guide.  

Neuroblastoma - Childhood - Stages and Groups

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will learn about how doctors describe neuroblastoma’s growth or spread. This is called the stage. To see other pages, use the menu on the side of your screen.

Staging is a way of describing a cancer, such as where it is located, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer. Once a diagnosis of neuroblastoma is confirmed, how much the tumor has grown and spread is evaluated or staged. The tumor’s stage helps your child’s doctor plan treatment.

There are two staging systems for neuroblastoma: INSS and INRGSS. Each is described below, followed by an explanation of risk groupings.

International Neuroblastoma Staging System Committee (INSS) system

The following is a brief summary of each INSS stage:

Stage 1: The tumor can be removed completely during surgery. Lymph nodes removed during surgery may or may not contain cancer, but other lymph nodes near the tumor do not.

Stage 2A: The tumor is located only in the area it started and cannot be completely removed during surgery. Nearby lymph nodes do not contain cancer.

Stage 2B: The tumor is located only in the area where it started and may or may not be completely removed during surgery, but nearby lymph nodes do contain cancer.

Stage 3: The tumor cannot be removed with surgery. It has spread to regional lymph nodes (lymph nodes near the tumor) or other areas near the tumor, but not to other parts of the body.

Stage 4: The original tumor has spread to distant lymph nodes (lymph nodes in other parts of the body), bones, bone marrow, liver, skin, and/or other organs, except for those listed in stage 4S, below.

Stage 4S: The original tumor is located only where it started (as in stage 1, 2A, or 2B), and it has spread only to the skin, liver, and/or bone marrow, in infants younger than one. The spread to the bone marrow is minimal, usually less than 10% of cells examined show cancer.

The International Neuroblastoma Risk Group Staging System (INRGSS)

The INRGSS was recently designed specifically for the newly-developed International Neuroblastoma Risk Group (INRG) pre-treatment classification system (see Risk groups, below). Unlike the INSS explained above, the INRGSS uses only the results of imaging tests taken before surgery and does not include surgical results or spread to lymph nodes to determine the stage. 

Stage L1: The tumor is located only in the area where it started; no risk factors found on imaging scans, such as CT or MRI.

Stage L2: The tumor has not spread beyond the area where it started and the nearby tissue; risk factors are found on imaging scans, such as CT or MRI.

Stage M: The tumor has spread to other parts of the body (except stage MS, see below)

Stage MS: The tumor has spread to only the skin, liver, and/or bone marrow.

Risk groups

Some children are cured with surgery alone or surgery with chemotherapy (see Treatment Options), but others have a very aggressive disease that is difficult to treat. By using a combination of factors, doctors can usually predict how well treatment will work for a neuroblastoma tumor, or if it will come back after treatment.

The INRG classification system uses factors that best predict how well treatment will work to determine risk groups. The lower the risk group, the more successful treatment is likely to be. Using the following factors, neuroblastoma is classified as very low-risk, low-risk, intermediate-risk, or high-risk:

  • The stage of the disease according to the INRG staging system
  • Age when diagnosed
  • Histologic category, such as maturing ganglioneuroma versus ganglioneuroblastoma, intermixed versus ganglioneuroblastoma, nodular versus neuroblastoma
  • Grade or how similar the tumor cells are to normal cells
  • MYCN gene status
  • Changes to chromosome 11q
  • Tumor cell ploidy (DNA content of tumor cells)

The Children’s Oncology Group (COG) uses the following factors to determine risk:

  • The stage of the disease according to the INSS system
  • Age when diagnosed
  • MYCN gene status
  • Tumor ploidy; this is only important for children younger than 18 months
  • Tumor histopathology (how the cancer cells look under a microscope)

Descriptions of low-risk, intermediate-risk, or high-risk neuroblastoma are listed below.

Low-risk neuroblastoma

  • Stage 1 disease
  • Stage 2A or 2B disease in which more than 50% of the tumor was surgically removed, except for a child with MYCN amplification
  • Stage 4S disease, no MYCN amplification, favorable histopathology, and hyperdiploidy (having extra chromosomes)

Intermediate-risk neuroblastoma

  • Stage 2A or 2B disease with no MYCN amplification in which less than 50% of the tumor was removed with surgery
  • Stage 3 disease in children younger than 18 months, no MYCN amplification
  • Stage 3 disease in children older than 18 months, no MYCN amplification, and favorable histopathology
  • Stage 4 disease in children younger than 12 months, no MYCN amplification.
  • Stage 4 disease in children age 12 months to 18 months, no MYCN amplification, hyperdiploidy, and favorable histology.
  • Stage 4S disease, no MYCN amplification, unfavorable histopathology and/or diploidy

High-risk neuroblastoma

  • Stage 2A or 2B disease and MYCN amplification
  • Stage 3 disease and MYCN amplification
  • Stage 3 disease in children age 18 months or older, no MYCN amplification, and unfavorable histopathology
  • Stage 4 disease in children younger than 12 months and MYCN amplification
  • Stage 4 disease in children between 12 months and 18 months old with MYCN amplification, and/or diploidy, and/or unfavorable histology
  • Stage 4 disease in children 18 months or older
  • Stage 4S disease and MYCN amplification

Treatment is then tailored according to the risk assigned to the disease. Most patients with low-risk disease receive surgery alone. Sometimes, infants with small localized tumor have been successfully watched closely without any surgery, called observation. Patients with intermediate-risk disease receive surgery and chemotherapy. In the Children’s Oncology Group, the recently completed clinical trial for the intermediate-risk group varied the length of treatment such as the number of cycles of chemotherapy. This resulted due to the presence or absence of tumor genetic changes in chromosomes 1p and 11q, tumor histology, tumor ploidy, stage, and age. A very intensive approach, often using several types of treatments, is used for patients with high-risk neuroblastoma. More information can be found in the Treatment Options section.

Information about the cancer’s stage will help the doctor recommend a treatment plan.  The next section helps explain the treatment options for neuroblastoma. Use the menu on the side of your screen to select Treatment Options, or you can select another section, to continue reading this guide.  

Neuroblastoma - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will learn about the different ways doctors use to treat children with this type of cancer. To see other pages, use the menu on the side of your screen.

In general, cancer in children is uncommon, so 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. Clinical trials are research studies that compare the best proven treatments available (standard treatments) with newer approaches to treatments that may be more effective. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Studying new treatments involves careful monitoring using scientific methods, and all participants are followed closely to track their health and progress.

To take advantage of these newer treatments, all 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. In many cases, a team of doctors treats a child with cancer; this is called a multidisciplinary team. Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, nutritionists, 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 neuroblastoma are listed below. Treatment options and recommendations depend on several factors, including the size and location of the tumor, whether the cancer has spread, the risk classification, possible side effects, family preferences, and the child’s overall health. The treatment is tailored according to the risk group the tumor has been assigned, including additional types of therapy. 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. Also, talk about the goals of each treatment with your child’s doctor and what your child can expect while receiving the treatment. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor and surrounding tissue during an operation. A surgical oncologist is a doctor who specializes in treating cancer using surgery. If the cancer has not spread, surgery can sometimes be used to remove the entire tumor. However, most neuroblastoma is not found until after the cancer has spread. In that situation, the doctor removes as much of the tumor as possible during surgery. If the tumor cannot be completely removed, the child may receive radiation therapy or chemotherapy (see below) to kill the remaining cancer cells.

The doctor may also remove lymph nodes on both sides of the abdomen to look at them under a microscope to see if there are cancer cells. The doctor may also take a biopsy of the liver to find out if the disease has spread to the liver. Talk with your child’s surgeon about the possible side effects of the surgery and how they will be relieve or managed. Learn more about cancer surgery.

Even if a tumor cannot be removed because of its location, a surgical biopsy (see Diagnosis) may still be done to determine the type of tumor.

Chemotherapy

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

Systemic chemotherapy is delivered through the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein or muscle using a needle or in a pill or capsule that is swallowed (orally). A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time.

Most children with neuroblastoma will need to have chemotherapy. Chemotherapy may be used as the primary treatment for neuroblastoma, or it may be given before surgery to shrink the tumor or after surgery to kill any remaining cancer cells. Occasionally, a single drug is given, but most often, a combination of drugs is used.

Children with intermediate-risk neuroblastoma often receive the following drugs:

  • Carboplatin (Paraplatin)
  • Cyclophosphamide (Neosar)
  • Doxorubicin (Adriamycin)

Children with high-risk neuroblastoma often receive the following drugs:

  • Cyclophosphamide
  • Ifosfamide (Ifex)
  • Cisplatin (Platinol)
  • Vincristine (Vincasar)
  • Doxorubicin
  • Melphalan (Alkeran)
  • Etoposide (VePesid, Toposar)
  • Topotecan (Hycamtin)
  • Busulfan (Busulfex, Myleran)
  • Carboplatin (Paraplatin)
  • Chimeric 14.18 antibody
  • Cytokines (GM-CSF and IL2)
  • Isotretinoin

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished. The severity of the side effects depends on the type and amount of the drug being given and the length of time the child receives the drug.

Learn more about 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 you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. A radiation therapy regimen (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.

Because radiation therapy can sometimes cause problems with the normal growth and development of a child’s brain and the ovaries (in girls) or testicles (in boys), the doctor may choose to treat the cancer in another way.

Learn more about radiation therapy.

Stem cell transplantation/bone marrow transplantation

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

Before recommending transplantation, doctors will talk with the patient 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 two types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). AUTO transplants are most often used for children with high-risk neuroblastoma.

In an AUTO transplant, the patient’s own stem cells are used. The stem cells are obtained from the patient when he or she is in remission from previous treatment. The stem cells are then frozen until they are needed, usually after the high-dose treatment (explained below) is completed.

The goal of transplantation is to destroy cancer cells in the marrow, blood, and other parts of the body and allow replacement blood stem cells create healthy bone marrow. In most stem cell transplants, the patient is treated with high doses of chemotherapy and/or radiation therapy to destroy as many cancer cells as possible. This also destroys the patient’s bone marrow tissue and suppresses the patient’s immune system. After the high-dose treatment is given, blood stem cells are infused into the patient’s vein to replace the bone marrow and restore normal blood counts. Different combinations of high-dose chemotherapy have been used before the stem cells are infused, and the best combination has not yet been determined. Recent research suggests that busulfan (Busulfex, Myleran) and melphalan may cause fewer side effects and may also be more effective than carboplatin, etoposide and melphalan. The Children’s Oncology Group is currently testing the safety and efficiency of busulfan and melphalan in a clinical trial.

In stem cell transplantation, the replacement cells engraft (begin to make new blood cells) and turn into healthy, blood-producing tissue in 10 days to three weeks. Destroying the patient’s own marrow reduces the body’s natural defenses, temporarily leaving the patient at an increased risk of infection. Until the patient’s immune system is back to normal, patients may need antibiotics and blood transfusions, and they need to follow certain safety restrictions provided by the health care team to help avoid infections.

In an AUTO transplant, there is little risk of tissue rejection because the replacement stem cells are the patient’s own cells. However, there is a risk in an autologous transplant that some of the cells that are put back into the patient could still be cancerous. Learn more about stem cell and bone marrow transplantation.

Retinoid therapy

Retinoids are substances that are similar to vitamin A. They are thought to help some cells mature into normal cells. When chemotherapy no longer works for some tumor cells, 13-cis-retinoic acid (RA) or isotretinoin has been given to children with high-risk neuroblastoma after completion of consolidation therapy, which is treatment given after the initial treatment. A Children’s Oncology Group study showed that when children who were in remission following stem cell transplant were given RA, their risk of recurrence was reduced.

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 bolster, target, or restore immune system function.

GD2 is a compound on the surface of cells, called a disialoganglioside, that is found in large amounts in most neuroblastomas. GD2-targeted treatments using a variety of monoclonal antibodies have been effective to treat patients with recurrent neuroblastoma. A monoclonal antibody is a substance made in a laboratory that acts like the antibodies the body’s immune system naturally makes to fight diseases such as a tumor.

The Children's Oncology Group has used antibody therapy combined with cytokines (chemicals released by cells that help control the immune system) and retinoid therapy (see above) for patients with high-risk neuroblastoma that responded to induction (first) chemotherapy and who have had a stem cell transplantation without the neuroblastoma growing or spreading. In a recent clinical trial, children received either RA alone, or RA plus cytokines and a specific type of monoclonal antibody. The patients who received the monoclonal antibody lived longer and had fewer recurrences. Immunotherapy is now a part of the standard treatment for patients with high-risk neuroblastoma. Learn more about immunotherapy.

Targeted delivery of radionuclides

A radionuclide called 131I MIBG is being researched to treat neuroblastoma. 131I MIBG has led to responses in about 30% of children with recurrent neuroblastoma. Based on how efficient this drug is in the setting of recurrence, a new clinical trial has been opened by the Children’s Oncology Group to test 131I MIBG combined with high-dose chemotherapy and stem cell transplantation in patients newly diagnosed with high-risk disease.

Remission and the chance of recurrence

A remission is when a tumor cannot be detected in the body and there are no symptoms. This may also be called “no evidence of disease” or NED. 

A remission can be temporary or permanent. This uncertainty leads to many survivors feeling worried or anxious that the tumor will come back. While many remissions are permanent, it’s important to talk with your doctor about the possibility of the tumor returning. Understanding the risk of recurrence and the treatment options may help you feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence.

If the tumor does return after the original treatment, it is called a recurrent or relapsed tumor. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence). If there is a recurrence, the tumor may need to be staged again (re-staging) using the system described in stages and risk grouping

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, you and your child’s doctor will talk about the treatment options. Often the treatment plan will include the therapies described above such as surgery, chemotherapy, and radiation therapy but may be used in a different combination or given at a different pace. Your child’s doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent tumor.

The treatment of recurrent neuroblastoma depends on where the tumor recurred and how aggressive the new tumor is. While there are treatments that work well for patients with low- and intermediate-risk disease who have a recurrence where the original tumor started, treating recurrent high-risk neuroblastoma is difficult. Neuroblastoma comes back in more than 50% of children with high-risk disease. Over the past several years, more new treatments and combinations have been developed for these patients:

  • Chemotherapy. The drugs topotecan and irinotecan (Camptosar) are often used early when there is a recurrence. Topotecan works better when combined with low-dose cyclophosphamide. The combination of irinotecan and temozolomide (Methazolastone, Temodar) has few side effects. This chemotherapy treatment regimen has been evaluated in a Children’s Oncology Group study, and it works well for some patients with recurrent neuroblastoma.
  • Targeted delivery of radionuclides. As explained above, radionuclides have been attached to MIBG, as well as somatostatin analogs (substances similar to a specific hormone produced by cells) and anti-GD2 antibodies. Early studies looking at combinations of radio-labeled MIBG and radiation sensitizers like irinotecan or histone deacetylase inhibitors like vorinostat (Zolinza) are ongoing. Radiosensitizers are drugs that make tumor cells more sensitive to radiation therapy, making radiation therapy more effective.
  • Immunotherapy. A special molecule combined with an antibody directed against the GD2 and interleukin-2 (IL2; a substance that can be used to boost the immune system) as well as other monoclonal antibodies directed against the GD2 antigen are being evaluated for patients with recurrent neuroblastoma. The combination of the immune-modulating agent lenolinomide and chimeric anti- GD2 is currently being tested in an ongoing Phase I clinical trial. Vaccines against tumor cell DNA, function, and structure, as well as use of immune cells created in the laboratory that can destroy tumor cells, are also being researched.
  • Retinoids. Fenretinide works against neuroblastoma in a laboratory, even when other retinoids do not. Research shows that the drug has few side effects. Newer versions of this drug are being created to make it easier to give this medication to young children.
  • Angiogenesis inhibitors. Anti-angiogenesis therapy is focused on stopping angiogenesis, which is the process of making new blood vessels. Because a tumor needs the nutrients delivered by blood vessels to grow and spread, the goal of anti-angiogenesis therapies is to “starve” the tumor. Research is focuses on stopping vascular endothelial growth factor (VEGF) from working, which is needed for blood vessels to form.
  • Tyrosine kinase inhibitors. Tyrosine kinase inhibitors are drugs that block cell communication and can stop tumor growth. Drugs that inhibit ALK, a tyrosine kinase that is mutated in some types of neuroblastoma and in some patients with familial neuroblastoma, are being tested in clinical trials. Other tyrosine kinase inhibitors that are being tested in clinical trials include inhibitors of the epidermal growth factor receptor (EGFR) and the insulin growth factor 1 receptor (IGR1R). These receptors help tumor cells grow and blocking them may slow or stop neuroblastoma growth. 
  • Aurora kinase inhibitors. Aurora A kinase helps cells divide early on and is found in all cells that are dividing. Aurora kinase inhibitors are drugs that block this protein, stopping or slowing the cells from dividing. Research on these drugs is ongoing.  
  • Other treatment options. Demethylating drugs such as decitabine (Dacogen) are currently being studied. Histone deacetylase inhibitors, substances that can prevent a tumor from growing and spreading, have also shown some promise as a treatment for neuroblastoma. At least three histone deacetylase inhibitors are now being studied in clinical trials for patients with refractory solid tumors, which are tumors that remain after the initial treatment. The New Approaches to Neuroblastoma Therapy (NANT) Phase I Consortium has a number of open clinical trials testing new treatments for children with relapsed or refractory neuroblastoma (www.nant.org).  Several studies are testing combination therapy that includes biologic agents plus chemotherapy.

When a child has a recurrent tumor, family members often experience emotions such as disbelief or fear. Families are encouraged to talk with the health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment fails

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 an advanced or terminal cancer. This diagnosis is stressful, and it 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.

Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Hospice care is a type of palliative care for people who are expected to live less than six months. It is designed to provide the best possible quality of life for people who are near the end of life. Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced 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 helps explain clinical trials, which are research studies. Use the menu on the side of your screen to select About Clinical Trials, or you can select another section, to continue reading this guide.  

Neuroblastoma - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

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. To see other pages, use the menu on the side of your screen.

Doctors and scientists are always looking for better ways to treat children with neuroblastoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. 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 are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your child’s doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

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

Sometimes people have concerns that, by participating in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials is rare. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options, so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must 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.

For specific topics being studied for neuroblastoma, learn more in the Latest Research section.

People 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. It is important that parents of a child participating in a clinical trial talk with the doctor and researchers about who will be providing their child’s treatment and care during the clinical trial, after the clinical trials ends, and/or if the person chooses to leave the clinical trial before it ends. 

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.

The next section helps explain the areas of research going on today about neuroblastoma. Use the menu on the side of your screen to select Latest Research, or you can select another section, to continue reading this guide.  

Neuroblastoma - Childhood - Current Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of tumor and how to treat it. To see other pages, use the menu on the side of your screen.

Doctors are working to learn more about neuroblastoma, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your child’s doctor about the diagnostic and treatment options best for your child.

Many of the items below are explained earlier in the Treatment Options section. Studies are underway to improve their use and effectiveness.

New drug combinations. Clinical trials are underway to study the use of a drug called topotecan in combination with cyclophosphamide. Researchers hope that this drug combination will increase the effectiveness and decrease the side effects of initial treatment.

Stem cell transplantation.  A clinical trial comparing two cycles of high-dose chemotherapy to one cycle of high-dose chemotherapy and stem cell transplantation has recently been completed. The results of this trial should be available within the next two years. Previous Children’s Oncology Group studies used carboplatin, etoposide, and melphan as the conditioning regimen before a stem cell transplant. The Children’s Oncology Group is now testing a new consolidation regimen consisting of busulfan and melphalan before a stem cell transplant. A European study compared outcome for children who received conditioning prior to stem cell translant with carboplatin, etoposide, melphan vs busulfan and melphalan, and their study suggested that outcome was better for children treated with busulfan and melphalan.

New radiation therapy techniques. A radioactive MIBG delivers radiation therapy to neuroblastoma cells for recurrent or refractory disease, with or without stem cell transplantation. By using a high-energy form of radioactive iodine with the MIBG, enough radiation therapy is given off to kill the neuroblastoma cells. This treatment is currently available at about a dozen centers in the United States. Clinical trials involving radioactive MIBG in the setting of relapse and for newly diagnosed children with high-risk neuroblastoma are ongoing.

Other treatment options. Research on the use of small molecules to target the cell functions that are abnormal in neuroblastoma cells are ongoing. Crizotinib and other drugs that inhibit ALK, a tyrosine kinase that is mutated in a small subset of neuroblastomas, as well as other tyrosine kinase inhibitors are being tested in early phase clinical trials.

Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current neuroblastoma treatments in order to improve patients’ comfort and quality of life.

Looking for More About the Latest Research?

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

The next section addresses how to cope with the symptoms of the disease or the side effects of its treatment. Use the menu on the side of your screen to select Coping with Side Effects, or you can select another section, to continue reading this guide.  

Neuroblastoma - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Cancer and its treatment can cause a variety of side effects. However, doctors have made major strides in recent years in reducing pain, nausea and vomiting, and other physical side effects of cancer treatments. Many treatments used today are less intensive but as effective as treatments used in the past. Doctors also have many ways to provide relief to patients when such side effects occur.

Fear of treatment side effects is common after a diagnosis of a tumor, but it may be helpful to know that preventing and controlling side effects is a major focus of your child’s health care team. Before treatment begins, talk with your child’s doctor about possible side effects of the specific treatments your child will be receiving.

The specific side effects that can occur depend on a variety of factors, including the type of cancer, its location, the individual treatment plan, including the length and dosage of treatment, and your child’s overall health. Common side effects for each treatment option are described in detail within the Treatment Options section.

Ask your child’s doctor which side effects are most likely to happen and which are not, when side effects are likely to occur, and how they will be addressed by the health care team. Also, be sure to communicate with the doctor about side effects your child experiences during and after treatment. Care of a patient’s symptoms and side effects is an important part of a child’s overall treatment plan; this is called palliative or supportive care. It helps children with cancer at any stage of illness be as comfortable as possible. Learn more about the most common side effects of cancer and different treatments, along with ways to prevent or control them.

Be sure to talk with your doctor about the level of caregiving your child may need during treatment and recovery, as family members and friends often play an important role in the care of a child with neuroblastoma. Learn more about caregiving.

In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. For many families, a diagnosis of neuroblastoma is stressful and can bring difficult emotions. Families are encouraged to share their feelings with a member of their health care team who can help with coping strategies, including concerns about managing the cost of your child’s cancer care

A side effect that occurs months or years after treatment is called a late effect. Treatment of late effects is an important part of survivorship care. Learn more about late effects or long-term side effects by reading the After Treatment section or talking with your child’s doctor.

The next section helps explain medical tests and check-ups needed after finishing treatment. Use the menu on the side of your screen to select After Treatment, or you can select another section, to continue reading this guide.  

Neuroblastoma - Childhood - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

ON THIS PAGE: You will read about your child’s medical care after treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

After treatment for neuroblastoma ends, talk with your child’s doctor about developing a follow-up care plan. This plan may include regular physical examinations and medical tests to monitor your child’s recovery for the coming months and years. All children treated for cancer, including neuroblastoma, should have life-long, follow-up care.

The child’s family is encouraged to organize and keep a record of the child’s medical information so that, 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. The doctor’s office can help you compile this. This information will be valuable to doctors who care for your child during his or her lifetime. ASCO offers cancer treatment summary forms to help keep track of the cancer treatment your child received and develop a survivorship care plan once treatment is completed.

After-treatment care for children treated for neuroblastoma includes the following. Always talk with your child’s doctor for more information.

Low-risk or intermediate-risk neuroblastoma. The child is evaluated every three to six months until 24 months after treatment ends, depending on the treatment given, the patient’s age, and other factors. Then, patients are evaluated at least once a year.

High-risk, advanced neuroblastoma. Follow-up care is decided on an individual basis. Tests are performed every few months for two to three years after treatment ends to find out whether the disease has recurred or gotten worse.

Based on the type of treatment the child received, the doctor will determine what examinations and tests are needed to check for long-term side effects and the possibility of secondary cancers. Your child’s doctor can recommend the necessary screening tests. Follow-up care should also address the child’s quality of life, including any developmental or emotional concerns. Learn more about the childhood cancer survivorship. Possible long-term side effects are described below.

Cardiovascular problems. If your child received doxorubicin during chemotherapy, he or she may be at risk for heart problems, including weakening of the heart muscle. The doctor may recommend imaging of the heart with echocardiograms (echo) or other tests, as well as electrocardiograms (ECG or EKG) and blood pressure monitoring. The risk of these problems is related to the total dose of doxorubicin, but is also increased if the child received radiation therapy to the chest.

Hearing problems. If your child has taken cisplatin/carboplatin, hearing loss is a possible side effect. Hearing tests are recommended at the end of treatment, and then once a year if the test results indicate a hearing problem.

Kidney problems. If your child has taken cisplatin or had a bone marrow/stem cell transplantation, the doctor will monitor kidney function by doing specific blood and urine tests as a part of a yearly visit. More tests may be needed if test results indicate a problem.

Hormonal changes. If your child received radiation therapy, his or her primary care doctor will monitor growth and development yearly and evaluate your child for delayed puberty at age 12 (girls) or 14 (boys) through hormone blood tests.

If your child received radiation therapy, the following secondary cancer risks should be considered:

Breast cancer. If your child received total body radiation therapy or radiation therapy to the chest, your child should learn how to do a breast self-examination once he or she reaches puberty and perform them monthly. Regular mammograms may begin in early adulthood, rather than waiting until later.

Skin cancer. You should learn to inspect your child’s skin and ask the doctor to inspect any unusual skin findings at each yearly physical examination.

Other cancers. It is important for children with cancer to receive regular primary medical care. Talk with your child’s doctor if you are concerned about any symptoms, especially if your child has long-lasting pain or a lump in an area that received radiation therapy.

Children who have had cancer can also 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 a balanced diet, 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 the next steps to take in survivorship.

Follow-up care after stem cell transplantation/bone marrow transplantation

Children who have had a bone marrow or stem cell transplantation may have late effects. Late effects of childhood cancer are side effects that can sometimes occur later in life from treatment for cancer as a child. They are called late effects to distinguish them from side effects that occur during treatment or soon after treatment. Possible late effects include:

  • Problems with the way the thyroid gland, kidneys, lungs, and heart work
  • Problems with growth
  • Problems handling infections
  • Increased risk of other cancers
  • Problems with fertility (ability to have a child) and hormones
  • Hearing loss

Because of these possible problems, it is very important for children treated with stem cell transplantation to have certain tests and immunizations once each year. These may include the following evaluations:

  • Heart tests (such as an echocardiogram and EKG)
  • Lung tests (such as pulmonary function testing, or PFT)
  • Blood tests that check the function of the kidneys, liver, and thyroid
  • Immunoglobulin levels (such as IgG)
  • Hearing tests (if needed)
  • Eye examination (if the child received radiation therapy to the head or total body radiation therapy)
  • Dental examination
  • Blood tests to evaluate hormone levels (such as testosterone, estrogen, and growth hormones)
  • If needed, an examination by an endocrinologist (a doctor who specializes in problems with glands and hormones)
  • Gynecologic examination for girls
  • Immunizations as directed by the health care team

The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select another section, to continue reading this guide.  

Neuroblastoma - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

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. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s 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 an e-list and other interactive tools to manage your child’s care.

  • Where is the cancer located?
  • What is the stage of the cancer? What does this mean?
  • What risk group has my child’s neuroblastoma been classified as? What does this mean?
  • Does my child’s tumor secrete any tumor markers?
  • Can you explain my child’s pathology report (laboratory test results) to me?
  • What are the treatment options?
  • What clinical trials are open to my child? Where are they located, and how do I find out more about them?
  • Does this hospital participate in clinical trials for children with neuroblastoma?
  • 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 is my child’s prognosis?
  • How many children with neuroblastoma are seen and treated at this hospital?
  • Who will be part of my child’s health care team, and what does each member do?
  • Who will be coordinating my child’s overall treatment and follow-up care?
  • What are the possible side effects of this treatment, both in the short term and the long term?
  • How will this treatment affect my child’s daily life? Will he or she be able to attend school or perform his or her usual activities?
  • 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 medical care, who can help me with these concerns?
  • What follow-up tests are needed, and how often are they needed?
  • What support services are available for my child? For my family?
  • Whom should I call for questions or problems?

The next section offers some more resources that may be helpful to you. Use the menu on the side of your screen to select Additional Resources, or you can select another section, to continue reading this guide.  

Neuroblastoma - Childhood - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 04/2014

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 Neuroblastoma. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond. Here are a few sections that may get you started in exploring the rest 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.

Review dictionary articles to help understand medical phrases and terms used in care and treatment.

- Read more about the first steps to take when newly diagnosed.

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

Learn more about coping with the emotions that neuroblastoma 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 people with this type of cancer.

- Explore next steps a person can take after active treatment is complete.

This is the end of Cancer.Net’s Guide to Childhood Neuroblastoma. Use the menu on the side of your screen to select another section, to continue reading this guide.