Cook Children's Neuroblastoma program is a leader in providing diagnosis and treatment for patients with neuroblastoma.
Neuroblastoma is a rare type of cancer that usually occurs in infants and young children and, occasionally, even before a child is born. It begins in the nerve tissue outside the brain where a solid tumor is formed by special nerve cells called neuroblasts. Normally, these cells would grow and mature into functioning nerve cells, but in neuroblastoma, they grow into cancer cells instead. It often starts in the adrenal glands, just above the kidneys, in the neck, chest or spinal cord.
The way neuroblastoma affects children depends on where the disease first started and how much it has spread to other parts of the body. At first, the symptoms may be similar to those of other common childhood illnesses and can be hard to diagnose. These symptoms may include irritability, fatigue, fever, and loss of appetite. These early warning signs can develop gradually so they may not be immediately noticeable. Additional symptoms can include:
- A lump in the abdomen, neck or chest
- Bulging eyes
- Dark circles around the eyes
- Bone pain
- Swollen stomach and trouble breathing in babies
- Painless, bluish lumps under the skin in babies
- Inability to move a body part
Sometimes neuroblastoma is found when a doctor or parent feels an unusual lump or mass somewhere in the child's body – most often in the abdomen, though tumors also can appear in the neck, chest and other places.
Signs of neuroblastoma can also happen when the tumor presses on nearby tissues as it grows or when the cancer spreads to other areas. The signs are different depending on where the cancer is found or how much it has grown.
Neuroblastoma is one of the few cancers in children that releases hormones that can cause problems with distant tissues and organs, even though the cancer has not spread to those tissues or organs. These problems are called paraneoplastic syndromes. Symptoms can include:
- Constant diarrhea
- High blood pressure (causing irritability)
- Rapid heartbeat
- Reddening (flushing) of the skin
An uncommon symptom is called the opsoclonus-myoclonus-ataxia syndrome or "dancing eyes, dancing feet." In this situation, the child has irregular, rapid eye movements (opsoclonus), twitch-like muscle spasms (myoclonus), and appears uncoordinated when standing or walking (ataxia). He or she may also have trouble speaking.
A complete medical history of your child will be taken, including illnesses, environmental and genetic risk factors, what symptoms your child has had, and for how long. Additional tests may include:
- A thorough physical exam
- Blood tests, including complete blood count (CBC)
- Blood and urine catecholamine tests to detect hormones such as epinephrine (adrenaline) and norepinephrine and metabolites in the urine including homovanillic acid (HVA) and vanillymandelic acid (VMA)
- Blood chemistry, including tests of liver and kidney function
- Bone marrow biopsy and aspiration
- Computed tomography (CT) of the chest and abdomen and, sometimes, X-rays
- Magnetic resonance imaging (MRI)
- MIBG scan
- PET scan
- Bone scan
- Biopsy of tumor
After the doctor runs tests to diagnose neuroblastoma, and to find out how big the tumor is and where it's located, he or she will determine the best treatment plan. Treatment will depend on the age of the child, the biologic characteristics of the tumor and whether the cancer has spread.
In infants and young toddlers, neuroblastoma may sometimes go away without any treatment; in other cases it can be treated with surgery alone. However, in many patients the tumors spread to other parts of the body, including the bones and bone marrow. In these cases, a combination of several treatments, such as:
Treating neuroblastoma is complex and often requires the expertise of many different doctors, nurses, and other health professionals.
Our neuroblastoma team, comprised of a clinical, surgical and research team, is able to meet the many needs of patients with neuroblastoma and those of their family members as well.
Many other specialists may be involved in your child's care as well, including nurse practitioners, nurses, psychologists, social services staff, rehabilitation specialists and other health professionals.
Neuroblastoma survivors have access to the Life After Cancer Program (LACP) where they are able to receive education about the therapy they have received and routine follow-up and screening.
Cook Children's neuroblastoma program offers a comprehensive array of clinical trial options for patients with all stages of neuroblastoma. We are a very active member of the Children's Oncology Group (COG) and are involved in clinical trial design and conduct of research. Our program was chosen because of our record of clinical care and commitment to clinical research and clinical trials. Learn more about Cook Children's neuroblastoma research.
Cook Children's is also a member of the New Approaches to Neuroblastoma Therapy (NANT) consortium. We partner and participate in other investigator and commercial clinical trials in order to provide the most personalized approach based on each individual patient's cancer profile.
Cook Children's neuroblastoma program receives a large number of referrals for clinical trial options, 131I-MIBG and second opinions. We are supported by extensive services that include nurses, clinical trial nurses, research professionals, social workers, family therapist, child life and music therapy. Our RN coordinator, Tracey Easley, acts as a liaison between the clinical team and research members and works with families during the referral process.
We look forward to providing hope to patients and their families through the continued growth of our neuroblastoma program and our ongoing pursuit of new advances for patients with this disease.
We are here to help.
If your child has been diagnosed, you probably have lots of questions. We can help. If you would like to schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-4007.