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Neuroblastoma in children is a cancer that starts in immature nerve cells or neuroblasts. Neuroblastoma occurs when the neuroblasts grow uncontrollably and form a solid tumor rather than developing into working nerve cells.

Neuroblastoma can start in any area of the body with clusters of nerve cells and spread to other parts of the body through the blood. Often, neuroblastoma starts in the tissue of the adrenal glands that are on top of the kidneys.

Almost all cases of neuroblastoma happen in infants and children younger than age 5, but the tumor occasionally is seen in teenagers or young adults. About 800 new cases of neuroblastoma are diagnosed each year in the U.S.

The board-certified pediatric neuroscience and cancer specialists with Norton Children’s Brain & Spinal Tumor Program collaborate to evaluate each case of neuroblastoma. They bring their individual experience, training and skills to regular case reviews to build a customized treatment plan for each child.

The five-year survival rate for neuroblastoma ranges from 50% for children in the highest risk group to 95% for those with low risk. Risk is determined by factors such as the child’s age, how far the cancer has developed, its location and tests on the neuroblastoma cells.

Many children go on to live longer than five years and many are cured, meaning no traces of cancer remain. Many treatment advances have been discovered in recent years, and the prognosis for children with neuroblastoma continues to improve.

Family’s Journey With Neuroblastoma Goes From Shock to Hope

An 18-month-old’s neuroblastoma survival story

Emaleigh’s neuroblastoma survival story: Surgeons removed a tumor near her aorta and vertebrae, leaving low risk of recurrence.

The neuroscience and oncology specialists with the Norton Children’s Brain & Spinal Tumor Program are working to lengthen life expectancy for kids with neuroblastoma. They stay at the forefront of research into new treatments, conduct clinical trials of new drugs and therapies, and publish their findings in prestigious medical journals so others can benefit from their discoveries.

The Brain & Spinal Tumor Program is a collaboration of Norton Children’s Neuroscience Institute and Norton Children’s Cancer Institute, both affiliated with the UofL School of Medicine.

Diagnosing Neuroblastoma

Suspected cases of neuroblastoma warrant tests to confirm the diagnosis and rule out other possible causes of symptoms. Tests include:

  • Biopsy to remove a tissue sample for evaluation by a pathologist
  • Blood tests
  • Bone marrow aspiration to collect a sample of bone marrow fluid
  • Bone marrow biopsy to extract a small amount of solid bone marrow
  • Imaging studies (such as X-rays, CT scans, MRIs and ultrasounds)
  • Urine tests
  • MIBG nuclear scan that can reveal cancer cells in the body

Neuroblastoma Symptoms

Initial symptoms of neuroblastoma often are vague, making diagnosis difficult in the early stages. Symptoms may include:

  • Constipation or diarrhea
  • Dark circles around the eyes in light-skinned children
  • Irritability
  • Loss of appetite
  • Pain
  • Swollen belly
  • Tiredness
  • Weight loss
  • Weakness
  • Fever

Neuroblastoma often is discovered in young children when a parent or doctor feels an unusual lump most often in the abdomen but can be in the neck, chest or elsewhere.

Neuroblastoma Treatment

The multidisciplinary team of physicians at the Brain & Spinal Tumor Program review each case in regular meetings to develop a treatment plan for each patient. Key factors in the treatment decision include how far the cancer has advanced and whether it has spread beyond its initial location.

Treatment can range from monitoring low-risk cases to more aggressive treatments in higher-risk cases. Surgery, chemotherapy and radiation therapy are common treatments.

For high-risk cases, stem cell transplant and immunotherapy treatments may be needed. The MIBG diagnostic tool also can be used as a treatment through higher levels of radiation. The MIBG delivers the radiation directly to the neuroblastoma cells and kills them.

Norton Children’s Cancer Institute is a long-standing member of the Children’s Oncology Group. The Children’s Oncology Group is the largest group of hospitals around the world that treat children with cancer. Our involvement means patients have access to innovative new treatments through clinical trials.

What to Expect From Norton Children’s Brain & Spinal Tumor Program 

  • If your child has just been diagnosed, we offer same-day and next business day appointments for urgent referrals.
  • Each child’s case is reviewed by a board of specialists who discuss possible treatment plans, so the patient benefits from a broad array of expertise, experience, training and research.
  • Neurologists, oncologists and other specialists see patients at the same location, making travel easier for families because appointments are scheduled for the same day.
  • Board-certified and fellowship-trained specialists at the forefront of new treatment advances work to attack tumors while protecting healthy brain and spinal tissue.
  • Norton Children’s Hospital is part of an elite group of pediatric hospitals that perform MRI-guided laser ablation surgery using the minimally invasive Visualase system to destroy diseased tissue, including deep brain tumors.
  • Support groups, social workers, psychiatrists, school liaison specialists and child life specialists identify and address the needs of patients and their families during and after medical treatment.
  • We help prepare for the transition back to school, determine appropriate educational placement and identify any additional services through a neuropsychologist evaluation.
  • Integrated rehabilitation by physical and occupational therapists begins as early as possible during treatment to give patients the greatest benefit.
  • Communicate with your provider, manage appointments, refill prescriptions and more anytime from a computer or mobile device with a free Norton MyChart account.

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