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Living with cancer· Appointment prep

Appointment sheet: Childhood cancers (all types)

One page to bring and write on: your details, the questions for Childhood cancers (all types) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Childhood cancers (all types)

Prepared with OnCo (onco.cc/prep/childhood-cancers/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

14 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 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. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Leukaemias
  1. 5.For my situation (leukaemias), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Blinatumomab, Tisagenlecleucel, and what side effects should I expect?
Solid tumours
  1. 7.For my situation (solid tumours), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Dinutuximab (ch14.18) / dinutuximab beta, and what side effects should I expect?
Survivorship
  1. 9.For my situation (survivorship), which of the standard options do you recommend and why?
Any stage
  1. 10.Are there clinical trials I could join, for example of Naxitamab, Tovorafenib, Obecabtagene autoleucel?
  2. 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 13.I read that “Most children with cancer live where cure rates are below 30%”. How does that affect my plan?
  5. 14.I read that “Late effects affect the majority of long-term survivors”. How does that affect my plan?

The words I may hear

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: TPMT and NUDT15 genotyping before thiopurines, Methylation classifier for brain tumours, Strain echocardiography (global longitudinal strain), Troponin and natriuretic peptide monitoring during cancer treatment, Methylation classifier for sarcomas, Photon-counting CT.

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.

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call