Neuroblastoma is a cancer of immature nerve cells of the sympathetic nervous system. It most often starts in an adrenal gland above the kidney, or alongside the spine in the abdomen, chest or neck. Nearly all cases are in children under 5.
Its behaviour ranges more widely than almost any other cancer. Some tumours in babies shrink without any treatment, while high-risk disease in older children needs many months of intensive combined therapy. Risk group, not the name of the disease, determines everything that follows.
Symptoms
- A lump or swelling in the abdomen, neck or chest
- Bone pain, limping or refusal to walk
- Dark bruise-like circles around the eyes
- Paleness, tiredness and fever
- Loss of appetite and weight
- A drooping eyelid with a small pupil
- Leg weakness or changes in bladder and bowel control from pressure on the spinal cord
- Rapid jerky eye movements and unsteadiness, which is rare
- Bluish skin lumps in infants
Causes and risk factors
The cause is unknown and it is not linked to anything parents did. The cancer arises from neural crest cells that failed to mature before birth. About 1 to 2 percent of cases are familial, mainly through inherited changes in the ALK or PHOX2B genes. Inside the tumour, amplification of the MYCN gene, certain chromosome changes and ALK mutations mark more aggressive behaviour and are tested in every child because they set the risk group.
How it is diagnosed
- Urine catecholamines: Breakdown products HVA and VMA are raised in most children.
- Ultrasound, then MRI or CT: Define the primary tumour and its relation to blood vessels and the spinal canal.
- MIBG scan: A nuclear scan that lights up neuroblastoma throughout the body. PET-CT is used if the tumour does not take up MIBG.
- Biopsy with molecular tests: Confirms the diagnosis and tests MYCN, chromosome changes and ALK.
- Bone marrow samples: Taken from both hip bones to look for spread.
Treatment options
- Observation: Appropriate for some small tumours in young infants, with close monitoring.
- Surgery: May be the only treatment for localised low-risk tumours, and follows chemotherapy in others.
- Chemotherapy: Moderate courses for intermediate risk. Intensive induction for high risk.
- High-dose chemotherapy with stem cell rescue: Consolidation for high-risk disease using the child's own stored stem cells.
- Radiotherapy: To the primary site, and sometimes to remaining metastatic sites.
- Immunotherapy and differentiation therapy: Anti-GD2 antibodies such as dinutuximab beta, usually with isotretinoin, as maintenance.
- MIBG therapy and ALK inhibitors: Targeted options for selected or relapsed cases, some only within clinical trials.
When it is urgent
New leg weakness, inability to pass urine, laboured breathing, a rapidly swelling abdomen in a baby, or any fever during chemotherapy are emergencies for your nearest children's hospital. Spinal cord compression has to be treated within hours.
Travelling to Türkiye for treatment
High-risk treatment takes around 12 to 18 months and cannot be pieced together from short trips. Families do travel for specific elements that are missing at home, such as MIBG therapy, anti-GD2 immunotherapy, complex tumour surgery or a clinical trial. If you are considering this, ask your child's oncologist to contact the receiving team directly so that the sequence of treatment is not interrupted. Be wary of any centre that offers a fixed package before it has reviewed scans, MIBG images, marrow results and tumour genetics.
Send your reports, scans and a short history and a Clinic-Y coordinator replies within 24 hours with suitable teams and written, all-inclusive proposals side by side. Reviewing your case is free.
Frequently Asked Questions
Can neuroblastoma go away by itself?
In some infants, especially with the special stage called MS, yes. This is decided by specialists and the child is watched closely.
What does high risk mean?
A group defined by age, spread and tumour genetics such as MYCN amplification. It determines that intensive multi-step therapy is needed.
Is immunotherapy available everywhere?
No. Access to anti-GD2 antibodies varies by country, which is a common reason for seeking care abroad.
What records should we send?
Imaging discs including MIBG, pathology with molecular results, marrow reports, urine markers and a full list of treatment given with dates.