When Your Child Has Neuroblastoma

What is neuroblastoma?

Neuroblastoma is a rare type of childhood cancer. It's the most common cancer in infants.

It starts in immature nerve cells outside the brain. About half the time, this cancer starts in the adrenal glands. These glands sit on top of the kidneys. It can also start in the belly, chest, or spinal cord. It can start in nerve tissue near the spine in the neck, too.

As the cancer cells grow and divide, they form a tumor. They can spread (metastasize) to other parts of the body. Neuroblastoma 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.

Children of any age can get neuroblastoma. Nearly all cases are found in children ages 5 and younger. Sometimes this tumor can be seen on ultrasound before a baby is born. 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.

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.

What causes neuroblastoma?

Neuroblastoma occurs when the genes in a cell are changed or damaged (mutated). This allows the cell to grow and divide out of control. Experts don't know what causes it. These gene changes are random. There's no known way to prevent them. In a small number of cases, the child has a family history of the tumor.

What are the symptoms of neuroblastoma?

The most common symptoms of neuroblastoma are caused when the tumor presses on nearby tissues or spreads to the bone. These are some of the common symptoms:

  • Dark circles around the eyes

  • Bone pain

  • Bulging eyes

  • Lump in the belly, neck, or chest

In babies, these are also common symptoms:

  • Trouble breathing

  • Swollen stomach

  • Painless, blue lumps under the skin

  • Weakness or not moving part of the body

Less common symptoms include:

  • Fever

  • Trouble breathing

  • Easy bleeding or bruising

  • High blood pressure

  • Severe, watery diarrhea

  • Uncontrolled eye movements and jerky muscle twitching, also known as “dancing eyes–dancing feet”

How is neuroblastoma diagnosed?

Your child’s healthcare provider will do a physical exam and a neurological exam. You'll be asked about your child’s health history and symptoms. Your child may also need 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 out tiny pieces of the tumor. These samples are then tested in a lab to look for cancer.

  • Bone marrow aspiration and biopsy. This is done to take bone marrow from the back of the hip bones. The samples are then tested for cancer.

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, it's small and has not spread. For neuroblastoma, stage 1 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. The more abnormal the cells are, the faster they grow. Staging and grading help the healthcare team plan treatment for your child.

The healthcare team also looks at:

  • Where the main tumor is

  • Genetic changes found in the tumor

  • Your child's age

  • How much of the tumor can be removed with surgery

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

How is neuroblastoma treated?

Your child will be treated by many kinds of healthcare providers who specialize in caring for children with cancer. For instance, you and your child may see a:

  • 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 age 1 may not need treatment. But if it is needed, one or more of these treatments may be used:

  • 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 (slow growing, not causing symptoms, and not likely to spread). 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 drug 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 as an injection.

  • Radiation therapy. This uses high-energy X-rays to destroy cancer cells and shrink a tumor.

Most children with cancer are treated as part of a clinical trial. These are research studies looking for new and better cancer treatments. They allow children to get the standard treatment used today, as well as new treatments that may work even better.

Supportive care

During cancer treatment, your child will also get supportive care. The goal of this is to:

  • Ease symptoms and side effects

  • Protect your child from infection

  • Prevent discomfort

  • Keep blood counts in a healthy range

Your child may be given:

  • Antibiotics. These medicines help prevent and fight infection.

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

  • Blood transfusions. This is done to restore the blood cells that have been destroyed by treatment. Blood is taken from a donor and stored until it's needed.

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. Long-term follow-up may include clinic visits, blood tests, imaging tests, and heart ultrasounds.

Getting support

Having a child with cancer 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 to your family. Contact these organizations for information and resources:

  • Children’s Neuroblastoma Cancer Foundation, www.nbhope.org

  • Children’s Oncology Group, www.childrensoncologygroup.org

Online Medical Reviewer: Adam Levy MD
Online Medical Reviewer: Kimberly Stump-Sutliff RN MSN AOCNS
Online Medical Reviewer: Lu Cunningham RN BSN
Date Last Reviewed: 6/1/2019
© 2000-2022 The StayWell Company, LLC. All rights reserved. This information is not intended as a substitute for professional medical care. Always follow your healthcare professional's instructions.