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What is neuroblastoma in children?
Neuroblastoma is cancer that starts when cells in the nervous system grow out of control.
These cells are called neuroblasts. Over time, the out-of-control cells form a tumor.
Neuroblastoma is the most common solid tumor cancer in babies under age 1. It’s rare
in children older than age 10.
Nerve fibers along the spinal cord
Clusters of nerve cells (called ganglia) along the nerve fibers
Nerve-like cells in the adrenal glands
In most cases, neuroblastoma starts in the adrenal glands. These glands are on the
top of both kidneys. They make hormones that help control things like heart rate,
blood pressure, and the body's stress response.
Neuroblastomas can also form on the nerve fibers in the abdomen and near the spine
in the chest, neck, or lower belly (pelvis).
In most cases, the cancer cells have spread to the bones, lymph nodes, or both by
the time neuroblastoma is diagnosed.
What causes neuroblastoma in a child?
Cancer is caused by changes (mutations) in the DNA of the cells. In most children,
this happens by chance. A very small number of children inherit the changed genes
from their parents.
What are the symptoms of neuroblastoma in a child?
Symptoms of neuroblastoma depend on the size of the tumor, where it is, and if the
cancer has spread. They tend to be different in each child.
Symptoms of a tumor in the belly (abdomen) can include:
Symptoms of a tumor in the chest can include:
A lump you can see or feel
Swelling in the face, neck, arms, or chest
A change in mental state
Coughing or trouble breathing
Drooping eyelids and other eye changes
Changes in feeling or movement of the arms or legs
Symptoms of a neuroblastoma that has spread to other parts of the body can include:
Enlarged lymph nodes
Bone pain or limping
Weakness, numbness, or inability to move arms or legs
Bruising around the eyes
Bluish bumps on the skin
Lumps on the head
Feeling tired or weak
Easy bruising or bleeding
A neuroblastoma may release hormones. This is called paraneoplastic syndrome. It can
cause symptoms such as:
A neuroblastoma can also cause opsoclonus-myoclonus-ataxia syndrome. This can lead
to symptoms such as:
Many of these symptoms can be caused by other health problems. Still, it's important
to take your child to a healthcare provider if you notice these symptoms. Only a healthcare
provider can tell if your child has cancer.
How is neuroblastoma diagnosed in a child?
You may take your child to a healthcare provider because of a lump, swelling, or other
change you've noticed. Your child's provider will ask about your child's medical history
and symptoms. A physical exam will be done. Your child may be referred to a specialist
in diagnosing and treating cancer in children (called pediatric oncologist).
If a neuroblastoma is suspected, tests will be needed to learn more:
Blood and urine tests. Blood tests check for certain substances that could be signs of disease. Your child
may also have urine and blood tests to check for hormones released by the tumor.
Ultrasound exam (US). Sound waves and a computer are used to create images of the inside of the body. An
ultrasound may be done to check your child's belly (abdomen) or kidneys.
X-ray. X-rays may be done to check your child's chest or bones.
CT scan. X-rays and a computer are used to make 3-D images of the inside of your child's body. Scans
of the belly (abdomen), lower belly (pelvis), or chest may be done. Contrast dye may
be used to get clearer pictures.
MRI scan. An MRI uses large magnets, radio waves, and a computer to make detailed pictures of the
inside of the body. This test is used to check for tumors in the brain and spinal
PET (positron emission tomography) scan. For this test, a radioactive sugar is put right into the bloodstream. Cancer cells
use the sugar faster than normal cells, so the sugar collects in cancer cells. A special
camera is then used to see where the radioactive sugar is in the body. A PET scan can
sometimes spot cancer cells in different parts of the body, even when they can’t be
seen with other tests. This test is often used in combination with a CT scan. This
is called a PET/CT scan.
MIBG (metaiodobenzylguanidine) scan. A small amount of radioactive iodine called MIBG is injected into a vein. It travels
through the blood and attaches to cancer cells. Scans may be taken over a few days
to see where it collects.
Bone marrow aspiration or biopsy. Bone marrow is found in the center of some bones. It’s where blood cells are made. A small
amount of bone marrow fluid may be taken out with a needle. This is called aspiration.
Or solid bone marrow tissue may be taken with a bigger needle. This is called a core
biopsy. Bone marrow is usually taken from the back of the pelvic bone. This test may
be done to see if cancer cells have reached the bone marrow.
Tumor biopsy. This is when a small piece (called a sample) of the tumor is taken out for testing.
It may be taken out with a needle or by making a surgical cut (incision). The removed
sample is tested for cancer cells. A biopsy is needed to diagnose neuroblastoma. An
imaging test, like an ultrasound or CT scan may be used to guide the needle during
Once neuroblastoma has been diagnosed, a stage is assigned. The stage is how much
cancer there is and if and where it has spread. Staging is used to decide which treatment
options are best. Your child's doctor will use 1 of these 2 staging systems:
The INSS system divides tumors into stages 1 through 4. It’s assigned after surgery has been done
to remove the tumor.
Stage 1 is early cancer. It's only in the place where it first started and only on
one side of the body. This means the tumor can be fully seen and removed by surgery.
Stages 2 and 3 are more complex. The tumor is harder to remove and cancer cells may
have spread to nearby tissues.
Stage 4 means cancer cells from the tumor have spread to other parts of the body far
from the primary (first) tumor. They may be in distant lymph nodes, the bone marrow,
skin, liver, or bones.
Stage 4S is only used in infants under age 1. The cancer may have spread to lymph
nodes, the liver, skin, or bone marrow, but it's only on 1 side of the body. There's
no cancer in the bones and no more than 10% of the bone marrow cells are cancer.
The INRGSS system divides tumors into 4 stages labeled L1, L2. M, and MS. Surgery does not need to
be done before assigning one of these stages. They're based on how the tumor looks
on imaging scans and biopsies. These stages are used to predict how much of the tumor
can be taken out with surgery.
The L groups means the cancer is only in one part of the body and has not spread far
from where it first started.
The M group means it has spread beyond where it first started to distant organs.
MS is used in children younger than 18 months with cancer that has spread to the skin,
liver, less than 10% of the bone marrow, or all 3. There's no sign of cancer in the
The healthcare team also looks at prognostic factors to get an idea of how your child’s
neuroblastoma will likely respond to treatment. These factors include:
Where the main tumor is
Gene and chromosome changes in the tumor cells
The amount of DNA in the tumor cells (called the DNA index)
Tumor histology, which is how different the cancer cells look compared to normal cells
The presence and amount of certain receptors on the cancer cells (called neurotrophin
The age of your child
Lab test results that measure the levels of certain substances in your child's blood
(like ferritin, NSE, and LDH)
Your child’s healthcare team will tell you more about the stage of your child’s cancer
and what the prognostic factors mean. The stages of neuroblastoma are very complex.
Be sure to ask the healthcare provider to explain the details of your child's cancer
to you in a way you can understand. Also be sure to ask the healthcare provider if
you have any questions.
How is neuroblastoma treated in a child?
Treatment will depend on the stage and other factors. Neuroblastomas can be treated
with any of these:
Surgery. Surgery is often done to remove as much of the tumor as possible (called resection).
It may not be an option if the cancer has spread.
Chemotherapy. These are strong drugs that kill cancer cells or stop them from growing. They may
be given into the vein (IV), injected as a shot, or taken by mouth. Chemo might be
used before or after surgery. Or it may be the main treatment if surgery can't be
Radiation therapy. High-energy X-rays or other types of energy are used to kill cancer cells or stop
them from growing. Radiation beams are aimed at the tumor from a large machine. This
is called external beam radiation.
High-dose chemotherapy/radiation with a stem cell transplant. Young blood cells (stem cells) are taken from the child or from a donor. This is followed
by high doses of chemotherapy and/or radiation. This damages the bone marrow. Your
child will then get the stem cells to rebuild the bone marrow.
Immunotherapy. This treatment helps the body's immune system attack cancer cells. It might be used
if there's a high risk of cancer returning.
Retinoid therapy. Retinoid medicine may be used after stem cell transplant if there's a high risk of
cancer returning. It can help reduce the chance of the cancer coming back.
Supportive care. Treatment can cause side effects. Medicines and other treatments can be used for
pain, fever, infection, and nausea and vomiting.
Clinical trials. Ask your child's healthcare provider if there are any treatments being tested that
may work well for your child. Clinical trials allow your child to get the best treatment
available now, and maybe new treatments that are expected to be better. Most children
with cancer are treated as part of a clinical trial.
With any cancer, how well a child is expected to recover (prognosis) varies. Keep
Getting medical treatment right away is important for the best outcome.
Ongoing follow-up care during and after treatment is needed.
New treatments are being tested to improve outcome and to lessen side effects.
What are possible complications of neuroblastoma in a child?
A child may have complications from the tumor or from treatment. These can include:
Easy bruising and/or bleeding
Higher risk of infection
Nausea and vomiting
Feeling tired (fatigue)
Problems with growth and development
Heart and lung problems
Changes in sexual development (delayed puberty)
Problems with the ability to have children (fertility) in the future
Memory and/or learning problems
Return of the cancer
Higher risk of other cancers later in life
Talk with your child's healthcare provider about side effects linked with their treatment.
Tell them about any changes you notice. There are often ways to manage side effects.
There may be things you can do and medicines you can take to help prevent or control
many treatment side effects.
Most side effects get better and go away over time after treatment ends. But some
can last the rest of your child's life. Talk to your child's treatment team about
what you can expect.
How can I help my child live with a neuroblastoma?
A child with a neuroblastoma needs ongoing care. Your child will be seen by oncologists
and other healthcare providers to treat any late effects of treatment and to watch
for signs or symptoms of the tumor returning. Imaging scans and other tests will be
Your child may need therapy to help with movement and muscle strength. This may be
done by physical and occupational therapists.
You can help your child manage treatment in many ways. For instance:
Your child may have trouble eating. A dietitian may be able to help.
Your child may be very tired. He or she will need to balance rest and activity. Encourage
your child to be active. This is good for overall health. And it may help to lessen
Get emotional support for your child. Find a counselor or child support group can
Make sure your child attends all follow-up appointments.
When should I call my child’s healthcare provider?
Your child's healthcare provider will talk with you about when to call. You may be
told to call if your child has:
Symptoms that get worse
Signs of an infection, such as fever
Side effects from treatment that affect your child's daily routine or don't get better
Ask your child's provider what signs to watch for and when to call. Know how to get
help after office hours and on weekends and holidays.
Key points about neuroblastoma in children
Neuroblastoma is a cancerous (malignant) tumor that starts in nerve tissue of infants
and very young children.
The symptoms of neuroblastoma vary a lot depending on the size of the tumor, where
it is, and whether it has spread. Common symptoms are a lump or swelling.
Neuroblastoma is diagnosed with blood and urine tests, imaging tests, and biopsy.
Treatment of neuroblastoma may include surgery, chemotherapy, radiation therapy, high-dose
chemotherapy/radiation with stem cell transplant, and other medicines.
Continuous follow-up care during and after treatment is needed
Tips to help you get the most from a visit to your child’s healthcare provider:
Know the reason for the visit and what you want to happen.
Before your visit, write down questions you want answered.
At the visit, write down the name of a new diagnosis, and any new medicines, treatments,
or tests. Also write down any new instructions your provider gives you for your child.
Know why a new medicine or treatment is prescribed and how it will help your child.
Also know what the side effects are.
Ask if your child’s condition can be treated in other ways.
Know why a test or procedure is recommended and what the results could mean.
Know what to expect if your child does not take the medicine or have the test or procedure.
If your child has a follow-up appointment, write down the date, time, and purpose
for that visit.
Know how you can contact your child’s provider after office hours. This is important
if your child becomes ill and you have questions or need advice.
Online Medical Reviewers:
- Adam Levy MD
- Kimberly Stump-Sutliff RN MSN AOCNS
- L Renee Watson MSN RN