Childhood cancers (all types)
Prepared with OnCo (onco.cc/prep/childhood-cancers/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
14 on the sheet- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Cytogenetics and minimal residual disease in leukaemia, MYCN amplification in neuroblastoma, Molecular subgroups in medulloblastoma, Germline predisposition), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
- 5.For my situation (leukaemias), which of the standard options do you recommend and why?
- 6.Am I a candidate for Blinatumomab, Tisagenlecleucel, and what side effects should I expect?
- 7.For my situation (solid tumours), which of the standard options do you recommend and why?
- 8.Am I a candidate for Dinutuximab (ch14.18) / dinutuximab beta, and what side effects should I expect?
- 9.For my situation (survivorship), which of the standard options do you recommend and why?
- 10.Are there clinical trials I could join, for example of Naxitamab, Tovorafenib, Obecabtagene autoleucel?
- 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 13.I read that “Most children with cancer live where cure rates are below 30%”. How does that affect my plan?
- 14.I read that “Late effects affect the majority of long-term survivors”. How does that affect my plan?
The words I may hear
- Second cancers after radiotherapy: Radiotherapy can itself cause a new cancer in the treated area, typically ten to thirty years later.
Tests and results to bring
Biomarker results to ask for: Cytogenetics and minimal residual disease in leukaemia, MYCN amplification in neuroblastoma, Molecular subgroups in medulloblastoma, Germline predisposition (Li-Fraumeni, RB1, WT1 and others).
Scans and tests linked to this cancer: Breast cancer after chest radiotherapy in childhood, and the screening that follows, TPMT and NUDT15 genotyping before thiopurines, How long it takes to diagnose cancer in a young person, and what the evidence actually says, Methylation classifier for brain tumours, Second cancers after childhood cancer: the risk by treatment, and why it is falling, Strain echocardiography (global longitudinal strain).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Leukaemias: Risk-stratified multi-agent chemotherapy over two to three years for ALL, with immunotherapy (blinatumomab, CAR-T) for high-risk or relapsed disease. See the ALL page. (Blinatumomab, Tisagenlecleucel)
- Solid tumours: Surgery, chemotherapy and radiotherapy by risk group in cooperative group protocols; anti-GD2 antibody for high-risk neuroblastoma. See the neuroblastoma, Wilms, sarcoma and brain tumour pages. (Dinutuximab (ch14.18) / dinutuximab beta)
- Survivorship: Lifelong follow-up for late effects on heart, fertility, growth and second cancers, with a survivorship care plan; trials that reduce therapy where cure rates are high. (Survivorship care and late-effects surveillance)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.