When Your Child Has Neuroblastoma

What is neuroblastoma?

Outline of boy showing spinal column, nerves, adrenal glands, and kidneys.
Neuroblastoma often begins in the adrenal glands. Or it begins in nerves that are attached to the spinal cord. These are called the sympathetic nerves.

Neuroblastoma is a rare type of childhood cancer. It forms in the area of the nerves that control blood pressure and some hormones. Children of any age can get neuroblastoma. Children age 5 and younger are affected most often. Different kinds of treatment can help shrink the cancer and make your child feel better. Your child's healthcare team will work closely with you to make decisions about your child's health.

Neuroblastoma often begins in the adrenal glands. These glands sit on top of the kidneys. It can also start in the abdomen, chest, or spinal cord. It can start in nerve tissue near the spine in the neck. When the cancer cells group together, they form a tumor. The tumor can spread (metastasize) to another part of the body. It may spread to the lungs, bone marrow, lymph nodes, or liver. It can also spread to the area behind the eyes. In infants, it can spread beneath the skin. Even though the cells can spread in the body, the disease is not contagious. It is not spread from person to person.

What causes neuroblastoma?

Neuroblastoma occurs when certain cells grow abnormally (mutate). The cause of this is not fully known. Changes in certain genes may affect the way your child’s cells grow. These gene changes are random. There is no known way to prevent them. Most often, the cause of cancer in children is unknown. In a small number of cases, the child has a family history of the tumor.

What are the symptoms of neuroblastoma?

These are some common symptoms of neuroblastoma:

  • Dark circles around the eyes

  • Bone pain

  • Bulging eyes

  • Swelling or pain in the abdomen

In babies, these are also common symptoms:

  • Trouble breathing

  • Painless, blue lumps under the skin

Less common symptoms include:

  • Fever

  • Trouble breathing

  • Easy bleeding or bruising

  • High increase in blood pressure

  • Severe, watery diarrhea

  • Uncontrolled eye movements and muscle twitching (opsoclonus myoclonus), also known as “dancing eyes–dancing feet”

How is neuroblastoma diagnosed?

Your child’s healthcare provider will give your child a physical exam. Your child will also have a neurological exam. You will be asked about your child’s health history. Your child may also have tests such as:

  • Blood or urine tests. These are done to look for certain chemicals in the blood and urine.

  • Imaging tests. These are done to take detailed pictures of areas inside the body. These may include X-ray, MRI, CT scan, MIBG scan, or ultrasound.

  • Biopsy. This is done to take tiny pieces of tissue from a tumor. The samples are then looked at with a microscope.

  • Bone marrow aspiration and biopsy. This is done to take samples of bone marrow from the hip bones. The samples are then looked at with a microscope.

Staging and grading of neuroblastoma

Staging is the process to note the size of the cancer and how much it has spread. Most cancers have their own staging system. Stage 1 is early cancer. For neuroblastoma, 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. Stage 4 means cancer cells from the tumor have spread to other parts of the body.

Grading is used to describe how abnormal the cancer cells look when seen through a microscope. The more abnormal the cells are, the faster they grow. Staging and grading help the healthcare team plan treatment for your child. They also help the team find out how well the treatment will work.

For assessing neuroblastoma, the healthcare team looks at:

  • Location of the main tumor

  • Genetic changes in the tumor

  • The age of your child

  • How much of the tumor is removed with surgery

  • Whether the cancer has spread to other areas of the body

  • How abnormal the cancer cells look under a microscope

Your child’s healthcare team will tell you more about the stage and grade of your child’s cancer. Be sure to ask the healthcare provider if you have any questions.

How is neuroblastoma treated?

Your child will be treated by several types of healthcare providers who specialize in caring for children with cancer. You child may see:

  • Pediatric surgeon

  • Pediatric cancer specialist (oncologist)

  • Endocrinologist

  • Neurologist

  • Neuroradiologist

  • Pediatrician

  • Social worker, counselor, or psychologist

The goal of treatment is to remove or destroy cancer cells. The kind of treatment your child gets depends on the type and stage of tumor your child has. Infants younger than 1 year old may not need treatment. But if it is needed, your child may need one or more of these:

  • Surgery. This is done to remove all or part of a tumor.

  • Watchful waiting. This is done after surgery if the tumor is low risk. Your healthcare provider can tell you more about the risk level of your child’s tumor.

  • Chemotherapy (“chemo”). This is the use of medicine to destroy cancer cells. More than one chemo medicines may be used. Chemo is given through a tube (IV) that’s put into a vein in the arm or chest. Or, it may be given by mouth or an injection.

  • Radiation therapy. This uses high-energy X-rays to destroy cancer cells and shrink a tumor. It may be used to treat a tumor that is not responding quickly to chemotherapy.

Supportive treatments

While being treated for cancer, your child will also have supportive treatments. The goal of these is to protect your child from infection, prevent discomfort, and bring the body’s blood counts to a healthy range. Your child may be given:

  • Antibiotics. These help to prevent and fight infection.

  • Anti-nausea and other medicines. These help ease side effects caused by treatment.

  • A blood transfusion. This is done to restore the blood cells destroyed by treatment. Blood is taken from a donor and stored until your child is ready to receive it.

Long-term care

Treatment for neuroblastoma can be hard on the body. Your child may need physical therapy. This is to get the body working normally after treatment. Also, chemotherapy and radiation may cause some problems. These may include damage to certain organs. Your child’s health will need to be watched for life. This may include clinic visits, blood tests, imaging tests, and ultrasounds of the heart.

Getting support

Having a cancer diagnosis for your child can be scary and confusing. Remember that you are not alone. Your child’s healthcare team will work with you during your child’s illness and care. You may also want to seek out other kinds of support. This can help you cope with the changes that cancer can bring. Contact these organizations for information and resources:

  • Children’s Neuroblastoma Cancer Foundation,

  • Children’s Oncology Group,

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