Neuroblastoma in Children

Neuroblastoma is a disease in which malignant (cancer) cells form in primitive nerve tissue called “ganglions” or in cells in the adrenal glands. Normally, there are two adrenal glands present in all of us, one above each kidney. In addition to the adrenal glands, other common neuroblastoma sites include the chest or nerve tissue near the spine or spinal cord.

The C.S. Mott Children’s Hospital Solid Tumor Oncology Program provides comprehensive, multidisciplinary care for children with neuroblastoma.

Our dedicated team of specialists evaluates your child in a single visit, and will create a customized treatment plan and begin your individualized treatment plan immediately. We are one of the first in the nation to offer this type of collaborative care for children with cancer. We are also one of the nation’s largest multidisciplinary programs caring for children with solid tumors, and have the largest pediatric oncology research effort in the state.

Neuroblastoma Symptoms

The most common symptom of neuroblastoma is a painless abdominal mass, usually found by a parent while changing the baby’s clothes or during a bath. Sometimes a pediatrician will discover the mass on a routine visit.

Other symptoms may include fever, irritability, or limping. Because the adrenal glands typically produce important hormones that help control heart rate, blood pressure, blood sugar and the way the body reacts to stress, patients with neuroblastoma often have elevated blood pressure or hormone problems.

Neuroblastoma can be an extremely painful disease, especially if it involves the bones or bone marrow.

Diagnosing Neuroblastoma

To diagnose neuroblastoma, a variety of tests may be ordered depending on where the disease arises. Generally, we start with an ultrasound and CT scan or an MRI of the sites involved, plus blood and urine studies. A metaiodobenzylguanidine (MIBG) scan – a procedure first discovered at the University of Michigan and now used around the world – which uses radioactive material and a scanner to find a neuroblastoma may be required, along with a PET scan and bone scan.

Unfortunately, 70% of neuroblastomas have already spread to the bones or bone marrow by the time of diagnosis. Once it has spread to the bones or bone marrow, it is termed “stage 4” disease, with cure rates of only 40-50% for children over 18 months of age. Cure rates are higher for patients with lower stages (stages 1-3) of disease.

Cutting-Edge Neuroblastoma Treatment

C.S. Mott Children’s Hospital is the largest, most advanced neuroblastoma program in the state of Michigan. We provide multidisciplinary care for children with neuroblastoma, and have been a pioneer in developing diagnostic techniques and treatment therapies, with advanced clinical trials regularly available to our patients.

Our Solid Tumor Oncology Program Tumor Board, made up of pediatric oncologists, surgeons, radiation oncologist, pathologists, radiologists, neurosurgeons and nuclear medicine physicians, meets weekly to discuss each of neuroblastoma patient’s treatment plans. Together, our doctors listen to each child’s story, look closely at the scans and determine which method of treatment would be best for the individual.

Neuroblastoma has specific treatment recommendations developed by the Children’s Oncology Group (COG), a nationwide cooperative group devoted to the study and treatment of pediatric malignancies. Based on age, staging and genetic profile, patients can be defined as having low risk, intermediate risk or high risk. Low-risk treatment can be careful observation or surgery with low-dose chemotherapy. Medium-risk treatment is generally surgery, followed by low- to medium-dose chemotherapy. High-risk treatment often involves high-dose chemotherapy, surgical resection of the primary mass, bone marrow transplant, radiation therapy and immunotherapy to help the immune system attack cancer cells.

Advanced Research and Access to Clinical Trials for Neuroblastoma

The Pediatric Oncology Program at University of Michigan Health C.S. Mott Children’s Hospital has an active research program in pediatric neuroblastoma, with several novel protocols developed for the treatment of patients who have failed primary therapy. We offer a number of neuroblastoma clinical trials for patients with relapsed or refractory disease.

U-M has been a pioneer in using MIBG as targeted therapy for patients with refractory disease since the therapy’s origins at U-M more than two decades ago. MIBG is a form of radiation therapy directed specifically to neuroblastoma cells, sparing normal tissue from high doses of radiation. When given in low doses, MIBG is useful for imaging of neuroblastoma. When given in higher doses, MIBG can be used as a treatment for patients. We are one of a handful of pediatric institutions in the country currently utilizing high-dose MIBG therapy for patients with neuroblastoma. We recently completed a bone marrow transplant study combining MIBG as part of the transplant regimen, and are partnering with both the Children’s Oncology Group (COG) and the New Advances in Neuroblastoma Consortium (NANT) to develop new strategies for MIBG therapy.

C.S. Mott Children’s Hospital physicians also recently led a groundbreaking COG immunotherapy trial showing unparalleled outcomes in the treatment of relapsed or resistant neuroblastoma. In addition, U-M is internationally renowned for leadership in precision oncology, using genetic sequencing to effectively target and treat cancer at an individualized level.