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When Your Child Has Neuroblastoma

Your child has been diagnosed with neuroblastoma. You are likely feeling shocked and scared. You are not alone. Support and treatment are available. Your child’s health care team will help you as you make important decisions regarding your child’s health.

What Is Neuroblastoma?

Outline of boy showing spinal column and pelvis, and kidneys. An adrenal gland sits on top of each kidney. Nerves run down either side of spinal column.

Neuroblastoma is a type of cancer that forms in the tissue of the nerves that control blood pressure and certain hormones. Neuroblastoma often begins in the adrenal gland, which sit just above the kidneys. When the cancer cells group together, they form a tumor. The tumor can spread (metastasize) to another part of the body, such as the lungs.

Who Gets Neuroblastoma?

Children at any age can get neuroblastoma, but kids age 5 and younger are affected most often. Neuroblastoma is not contagious. This means your child can’t pass it to another person.

What Causes Neuroblastoma?

Neuroblastoma occurs because cells mutate and grow abnormally. What causes this to happen is not fully known. Mutations in certain genes may affect the way your child’s cells grow. This gene mutation is random and couldn’t have been prevented. Most often, the cause of cancer in children is unknown.

What Are the Symptoms of Neuroblastoma?

Some common symptoms of neuroblastoma include dark circles around the eyes, bone pain, fatigue, and swelling of and pain in the abdomen. Your child may have experienced some of these symptoms, or other symptoms.

How Is Neuroblastoma Diagnosed?

Your child’s health care provider examines your child. You will be asked about your child’s health history. Your child may also have one or more of the following:

  • Blood or urine tests to take samples of blood or urine to be tested

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

  • A biopsy to take a small sample of tissue from a tumor to have it looked at under a microscope

  • Bone marrow aspirations and biopsies to take samples of bone marrow from the hipbones and view them under a microscope

 

Staging and Grading of Neuroblastoma

Staging is the process that determines the size of the cancer and how much it has spread. Most cancers have their own staging system. 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 health care team plan treatment for your child. They also help determine the likelihood of cure (prognosis). The process used for neuroblastoma takes into consideration the following:

  • Location of the primary tumor

  • Genetic changes within the tumor

  • The age of the child

  • How much of the tumor is removed with surgery

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

  • How abnormal the cancer cells look under a microscope

The cancer is also broken down into stages 1 through 4 (often written as I through IV). The different stage numbers refer to the tumor’s size and if it has spread. For instance, stage I is a very early stage of cancer. And stage IV means the cancer is widespread. Neuroblastoma is also broken down into further classifications. Your health care provider can tell you more if needed. Be sure to ask your health care provider if you have any questions about the stage of your child’s cancer.

How Is Neuroblastoma Treated?

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

  • Surgery to remove all or part of a tumor.

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

  • Chemotherapy (“chemo”) to destroy cancer cells with powerful cancer-fighting medications. Multiple chemo medications may be used. They are given through a tube (IV) that’s usually put into a vein in the arm or chest. Or, they may be given by mouth or injection.

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

Supportive Treatments

The goal of supportive treatments is to protect the child from infection, prevent discomfort, and bring the body’s blood counts to a healthy range. During your child’s treatment, he or she may be given antibiotics. These are medications that help prevent and fight infection. Anti-nausea and other medications may also be given. These help ease side effects caused by treatment. Your child may receive a blood transfusion to restore the blood cells destroyed by treatment. Blood is taken from a donor and stored until the child is ready to receive it.

What Are the Long-Term Concerns?

Your child may need physical therapy. This is to get the body functioning normally after treatment. Also, chemotherapy and radiation may cause some problems, such as damage to certain organs. So your child’s health will need to be monitored for life. This may include clinic visits, blood tests, imaging tests, and ultrasounds of the heart.

Coping

Receiving a cancer diagnosis for your child is scary and confusing. It’s important to remember that you are not alone. Your child’s health care team will work with you and your child throughout your child’s illness and care. You may also wish to seek information and support for yourself. Doing so can help you cope with the changes cancer brings. Learning about and talking with others who also have a child with cancer may help you and your family cope. Also, visit the Children’s Neuroblastoma Cancer Foundation and the Children's Oncology Group

 

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