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Living with cancer· Appointment prep

Appointment sheet: Hepatoblastoma

One page to bring and write on: your details, the questions for Hepatoblastoma 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

Hepatoblastoma

Prepared with OnCo (onco.cc/prep/hepatoblastoma/). 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

16 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 Serum AFP, PRETEXT / POST-TEXT group and annotation factors, CHIC risk group, CTNNB1 mutation, NFE2L2, TERT, Germline APCand 11p15), 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?
Very low / standard risk (PRETEXT I-III, resectable, AFP >100)
  1. 5.For my situation (very low / standard risk (pretext i-iii, resectable, afp >100)), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Cisplatin, Sodium thiosulfate (otoprotectant), and what side effects should I expect?
High risk (metastatic, AFP <100, PRETEXT IV, vascular involvement)
  1. 7.For my situation (high risk (metastatic, afp <100, pretext iv, vascular involvement)), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Cisplatin, Doxorubicin, Vincristine or related drugs, and what side effects should I expect?
Unresectable after chemotherapy (POST-TEXT IV, central vascular involvement)
  1. 9.For my situation (unresectable after chemotherapy (post-text iv, central vascular involvement)), which of the standard options do you recommend and why?
Relapsed/refractory
  1. 10.For my situation (relapsed/refractory), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Irinotecan (and liposomal irinotecan), and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of Sodium thiosulfate (otoprotectant), Liver transplantation for cancer (Milan criteria and beyond)?
  2. 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 15.I read that “Metastatic and low-AFP disease”. How does that affect my plan?
  5. 16.I read that “Long-term effects of cisplatin (hearing, kidney) and doxorubicin (heart)”. How does that affect my plan?

The words I may hear

  • Alpha-fetoprotein (AFP): Alpha-fetoprotein is a protein made by the fetal liver that a substantial share of hepatocellular carcinomas switch back on.

Tests and results to bring

Biomarker results to ask for: Serum AFP (diagnosis, response, relapse; <100 ng/mL poor), PRETEXT / POST-TEXT group and annotation factors (V, P, E, M, R), CHIC risk group (age, AFP, PRETEXT, metastases), CTNNB1 mutation, NFE2L2, TERT, Germline APC (FAP) and 11p15 (Beckwith-Wiedemann).

Scans and tests linked to this cancer: HCC surveillance in cirrhosis (ultrasound + AFP), Ultrasound.

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

The treatments I may be offered

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