Learning About Neuroblastoma

What is neuroblastoma?

Neuroblastoma is a type of cancer that affects children. Cancer is a growth of abnormal cells. The cells grow out of control and destroy nearby tissue.

This cancer starts in immature cells that normally become part of the child's nervous system. Because nerves grow all over the body, the tumor can start in many different places.

It's most common in the belly. It may start in the adrenal glands, organs that sit above the kidneys. It can also happen in the chest, the neck, or the nerves that run along the spinal column. It can spread to the liver, bones, skin, and other parts of the body.

What causes it?

Doctors don't always know why someone gets neuroblastoma. Most of the time, these tumors form because the genes of immature nerve cells are damaged.

In rare cases, it may run in families.

What are the symptoms?

You or the doctor may feel a mass in your child's belly. If the tumor has spread, you may notice changes like swelling or dark circles around the eyes, or bluish areas on the skin. Other symptoms may include:

• Diarrhea.
• Weight loss.
• Bone pain.
• Bruising.
• Unusual eye and muscle motions, in rare cases.

Sometimes there are no clear symptoms, but your child may seem more tired or not want to eat.

How is it diagnosed?

The doctor will ask about your child's past health. He or she will do a physical exam.

Your child may have several imaging tests. An ultrasound test may be the first test used. CT or MRI scans can show the size of the tumor and if it's spread.

Your child may have other tests, such as:

• Urine tests.
• Blood tests.
• A biopsy. A sample of the tumor or bone marrow is sent to a lab so that it can be looked at under a microscope. It can show if something is cancer and what type.
• Genetic tests on the biopsy sample.

Sometimes neuroblastoma is found on an imaging test, like an ultrasound, before a baby is born.

What are the stages?

After the tumor is removed and more imaging tests are done, the doctor will talk with you about the stage of your child's cancer. Stage 1 means that the tumor was only in one area and that the surgeon removed all of the cancer that he or she could find. Stages 2 through 4 describe if the cancer has spread a little or to other parts of the body. There are a few special stages as well. For example, there's a stage for infants with limited spread in the skin, liver, or bone marrow.

Your child will also be assigned a risk group. It's another way to describe how quickly the tumor is growing. The groups are low risk, intermediate risk, and high risk. Risk is based on your child's age, the stage of the neuroblastoma, and lab reports. Your child's risk group will be used to plan your child's treatment.

How is it treated?

In some low-risk cases, the tumor may go away on its own. Doctors will watch it carefully to see if it grows or shrinks.

Most of the time, a doctor will remove the tumor with surgery.

In some intermediate-risk and most high-risk cases, your child will have chemotherapy (chemo). Chemo is medicine that destroys cancer cells. Your child may start chemo even before surgery.

Radiation therapy may be used for tumors that have spread or that look like they might spread. It uses high-energy rays, such as X-rays, to destroy cancer cells and shrink tumors in the body. Other treatments may include high-dose chemotherapy followed by a stem cell transplant, and other medicines, such as immunotherapy.

Ask your doctor about having your child take part in a clinical trial. A clinical trial is a study of a new or different way to treat cancer. People in clinical trials get the latest treatments for their cancer and are closely watched. For more information, call the National Cancer Institute's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).

What are some things to think about?

• Some tumors are aggressive and need treatment right away. But most cancer grows slowly enough that you can take a little time to find out more about your child's cancer as you decide about treatment.
• Talk to your child. Answer all of your child's questions honestly. If you don't know the answers, help your child find out.
• Ask any questions you might have. You can talk to the doctor, nurses, counselors, and other advisors.
• Talk to family, friends, and supporters. Get the kinds of help you need.
• Think about getting a second opinion from another doctor. Before your child starts major treatment, it's a good idea to check with another doctor about the type of cancer your child has and what stage it is. Your child's doctor or insurance company can recommend someone for a second opinion.