Neuroblastoma in children

The pediatric oncologists, nurses and other clinical specialists at Advocate Children’s Hospital have the experience to treat childhood neuroblastoma. We work with you and your child to create the right treatment plan, whether it’s careful watching and waiting, chemotherapy or surgery.

Our doctors actively participate in clinical trials aimed at developing new and better treatments for this rare condition. We keep you informed of all available treatments that may help your child.

Advocate Children’s approach to childhood cancer care

Our expert cancer care team works with you and your child to find the best treatment and greatest chance for a cure. We get to know your whole family, with each appointment taking place in a comforting environment.

We have cancer centers in Park Ridge and Oak Lawn, letting your family avoid long, tiring drives into the city. Our social workers carefully organize appointments, bringing together the team you require and not keeping you longer than needed. On-call nurses are available 24/7 for questions and concerns.

About childhood neuroblastoma

Neuroblastoma is a tumor that starts in the nerve cells of infants and toddlers. It most often begins in the adrenal glands, which sit on top of the kidneys. It can also start near the spine.

Many children survive this rare cancer, and we are always working to find more effective treatments. Our doctors go through all available options with you.

Childhood neuroblastoma signs and symptoms

Many families start with their pediatrician, who discusses their concerns and asks about symptoms.

Signs of neuroblastoma include:

• Pain and respiratory problems: A child might have pain in their chest, back, arms, legs or other bones. They may have trouble breathing or a cough that won’t go away.
• Eye problems: You may notice your child’s eyes bulge out. They might have dark circles under the eyes, black eyes or droopy eyelids. Sometimes parents notice vision problems, changes in eye color or unusual eye movements.
• Lumps: Doctors or parents might notice lumps in a child’s abdomen, chest, neck or pelvis.
• Skin: Children may have lesions or bumps under their skin. They may have blue or purple patches.
• Fever and anemia: A child might have frequent fevers or anemia (low red blood cell count) that won’t go away.

Diagnosing childhood neuroblastoma

Our doctors use the most accurate tests to determine if your child may have neuroblastoma. Some diagnostic tests used to find the disease include:

• Blood and urine tests: We check for anemia and other factors and see how the liver and kidneys are doing. We also look for substances in urine that indicate a tumor has formed.
• Tumor sequencing: Sometimes identifiable genetic changes in cancer cells drive rapid growth. Our doctors look for these mutations to determine how they may affect your child and plan possible treatment.
• Bone marrow aspiration and biopsy: Bone marrow contains both solid and liquid parts. Doctors may take some of the solid tissue (biopsy) or the liquid (aspiration) to examine the cells.
• Body scans: Your doctor may recommend a scan that uses X-rays, magnetic fields or radioactive substances to create pictures of the inside of the body. An MIBG scan uses a protein called metaiodobenzylguanidine (MIBG), given before the scan. Cancerous cells absorb it, making it helpful in finding neuroblastoma.

Childhood neuroblastoma stages and risk groups

Doctors need to examine the neuroblastoma and assign it a stage to help with treatment decisions. They perform tests to determine its location, if it has spread and if it’s causing problems in other parts of the body.

The particulars of each tumor and the extent of the cancer vary from child to child. Doctors may call those differences the cancer’s “clinical behavior.” Along with your child’s age, they use the information to determine if your child’s risk is very low, low, intermediate or high. Our doctors review the staging and risk with you as you work together on a treatment plan.

Childhood neuroblastoma treatments

A child’s risk group affects what kind of neuroblastoma treatment they receive. Generally, doctors follow certain guidelines:

• Very low and low risk: Doctors carefully monitor the neuroblastoma with frequent checkups or perform surgery to remove it.
• Intermediate risk: Children may undergo cancer surgery and receive chemotherapy.
• High risk: Doctors usually recommend several types of aggressive treatment, possibly including a targeted therapy aimed at particular features of neuroblastoma cells. Our cancer centers also participate in clinical trials, which help develop new treatments for these rare cancers.

Neuroblastoma treatment side effects

Treatment for neuroblastoma may have side effects that impact your child’s health, either right away or later in life. Your child’s team discusses possible side effects with you and your child before treatment. We do everything we can to minimize their discomfort.

Support for your child and family

A child’s cancer diagnosis affects everyone in the family. We try to help, with a child life specialist who works with your family throughout your child’s treatment. Read more about our support for your child and family, including:

• On-call nurses who can answer questions 24/7
• School assistance during and after treatment
• Free events and activities for your family

Childhood neuroblastoma survivorship and transition to adulthood

After their active treatment is finished, neuroblastoma survivors may need support and encouragement caring for their long-term health. It’s important for them to watch for effects from the cancer or its treatment, such as issues with hearing or their kidneys.

Our Pediatric Oncology Survivors in Transition (P.O.S.T.) program helps your child and family move from cancer care into survivorship. We meet regularly and support your child and family by:

• Celebrating survivorship
• Keeping track of follow-up exams and testing
• Watching for long-term or late effects of cancer or chemotherapy
• Coordinating with our Adolescent Center and adult doctors during your child’s teen years