• INRG staging and risk groups: INRG staging is the international system that sorts neuroblastoma into four risk groups, from the lowest (often observed, sometimes regressing on its own) to high risk (about half of patients), using age under 18 months, spread, MYCN amplification, 11q status, ploidy and histology.
• MYCN amplification: Extra copies of the MYCN oncogene, found in about 20% of neuroblastomas, mark the most aggressive disease and define high risk at any age.
• Segmental chromosomal aberrations and ploidy (neuroblastoma): In a child's neuroblastoma the pattern of chromosome damage is a crystal ball: tumours that have gained or lost whole chromosomes tend to regress or be cured, tumours with broken segments (11q loss, 1p loss, 17q gain) or with MYCN amplified relapse, and the pattern moves a child between low, intermediate and high-risk treatment.
• Urinary catecholamine metabolites (VMA and HVA): Neuroblastoma cells make adrenaline-type hormones and spill their breakdown products, VMA and HVA, into urine; a simple urine test supports the diagnosis in nine out of ten children, and falling levels after treatment or rising ones in follow-up track the tumour without a scan.
• Late effects and survivorship toxicity: Health problems appearing months or decades after treatment ends: heart damage, infertility, second cancers, lymphoedema, dry mouth, memory problems, weak bones.

Biomarker results to ask for: INRG stage (L1, L2, MS) from image-defined risk factors, MYCN amplification (must be absent), 11q aberration, DNA ploidy, INPC histology, Urinary catecholamine metabolites (HVA, VMA), Age at diagnosis.

Scans and tests linked to this cancer: Active surveillance, MRI, Ultrasound.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

• L1 tumours and small adrenal masses in infants: Observation with serial ultrasound and urinary catecholamines, or surgical resection; no chemotherapy. (INRG staging and risk groups, Active surveillance, Ultrasound, MRI, MYCN amplification)
• L2 tumours in infants with favourable biology: Expectant observation or surgery; short carboplatin and etoposide or cyclophosphamide only for symptoms or threat to organs. (Active surveillance, Carboplatin, Etoposide, Cyclophosphamide, INRG staging and risk groups)
• Stage MS: Observation; carboplatin and etoposide or low-dose cyclophosphamide for a rapidly enlarging liver or respiratory compromise. (Active surveillance, Carboplatin, Etoposide, Cyclophosphamide, Ultrasound)
• Follow-up: Ultrasound and urinary catecholamines, tapering over years; late-effects follow-up for the few who received chemotherapy. (Ultrasound, MRI, Late effects and survivorship toxicity)

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.