• Radiotherapy: Using high-energy X-rays or particles to damage the DNA of cancer cells in a precisely aimed volume of the body.
• 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 (L2, M in infants, MS), MYCN amplification (must be absent), 11q aberration, DNA ploidy, INPC histology, ALK mutation, Urinary catecholamine metabolites.

Scans and tests linked to this cancer: MRI, MIBG imaging and 131I-MIBG therapy.

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

• Response assessment and surgery: MRI or CT and MIBG scan after chemotherapy; resection of the residual primary where safe, otherwise observation of the residual mass. (MRI, MIBG imaging and 131I-MIBG therapy, INRG staging and risk groups)
• Chemotherapy: Two to eight cycles of carboplatin, etoposide, cyclophosphamide and doxorubicin by biology and response (A3961, ANBL0531), then surgery when resectable. (Carboplatin, Etoposide, Cyclophosphamide, Doxorubicin, Cytotoxic chemotherapy, INRG staging and risk groups)
• Non-responding or life-threatening disease: Radiotherapy to the primary or to a compressing lesion; escalation to high-risk therapy if biology proves unfavourable. (IMRT / IGRT (modern external beam), Radiotherapy)
• Follow-up: Hearing, kidney, cardiac and fertility follow-up for the chemotherapy given. (Late effects and survivorship toxicity, Cardio-oncology, Oncofertility and fertility preservation)

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