Hereditary Neuroblastoma: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 2, 2026.
What kind of doctor treats Hereditary Neuroblastoma?
Children with neuroblastoma are usually treated by a pediatric oncologist, a doctor who specializes in childhood cancers. A family doctor or pediatrician often makes the first referral. Families facing an inherited risk may also work with a genetics specialist. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What it is
Neuroblastoma is a rare cancer that starts in very young nerve cells called neuroblasts. It most often forms in the adrenal glands or along the spine in the chest and belly. Most cases happen by chance, but in some families the risk is passed down from parent to child.
Symptoms
Signs depend on where the tumor grows. Many children have a lump in the belly. Other signs include belly pain, poor feeding, weight loss, tiredness, or bone pain. A tumor near the spine can press on nerves and cause weakness or trouble walking.
Causes and who gets it
Hereditary neuroblastoma happens when a gene change that raises cancer risk is passed from parent to child. Changes in genes like ALK and PHOX2B are linked to this inherited risk. It is very rare, and only a small share of all neuroblastoma cases are hereditary.
How doctors diagnose it
Doctors start with a physical exam and family health history. Imaging tests such as ultrasound, CT, or MRI scans can show where a tumor is. Blood and urine tests look for chemicals made by neuroblastoma cells, and a biopsy confirms the diagnosis.
Treatment
Treatment depends on the child's age, where the tumor is, and how far it has spread. Some infants with small tumors are watched closely at first, because these tumors can shrink on their own.
When to see a doctor
See a doctor if a child has a lump in the belly, ongoing belly pain, or unexplained weight loss. Other signs include tiredness, bone pain, or weakness. Mention any family history of neuroblastoma, since genetic counseling may help.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee. Either one can order early tests, track symptoms, coordinate referrals, and answer questions between specialist visits. When cancer is suspected, they will refer the child to a specialist team.
Common questions
Can adults get hereditary neuroblastoma?
Neuroblastoma is very rare in adults and older children. The inherited gene changes can be carried by adults, though. Adults can pass these changes to their children. Adults with a family history can talk to a genetics counselor about testing.
Does carrying the gene change mean a child will get cancer?
No. Many people who carry a gene change never develop neuroblastoma. The gene change raises the risk, but it does not guarantee the disease.
Is neuroblastoma always serious?
Not always. Some tumors in infants shrink or disappear without treatment. Outcomes vary a lot based on the child's age and how far the disease has spread.
Should family members get genetic testing?
It depends on the family's history and the specific gene involved. A genetics counselor can explain the chances of passing the change on and what testing would show.
Sources
- MedlinePlus Genetics - Neuroblastoma
- NIH Genetic and Rare Diseases Information Center - Neuroblastoma
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
