The first 60 days: Hepatoblastoma
Hepatoblastoma is a liver cancer of toddlers, cured in most standard-risk cases with cisplatin chemotherapy and surgery, including liver transplant when the tumour cannot be cut out. Sodium thiosulfate given after cisplatin halves the permanent hearing loss cisplatin causes, and became the first approved otoprotectant in 2022. Below, week by week, is what OnCo's record of Hepatoblastoma says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- SurgeonNamed in the standard of care for: Very low / standard risk (PRETEXT I-III, resectable, AFP >100), High risk (metastatic, AFP <100, PRETEXT IV, vascular involvement), Unresectable after chemotherapy (POST-TEXT IV, central vascular involvement), Relapsed/refractory.
- Medical oncologistNamed in the standard of care for: Very low / standard risk (PRETEXT I-III, resectable, AFP >100), High risk (metastatic, AFP <100, PRETEXT IV, vascular involvement), Relapsed/refractory.
- Transplant and cell therapy teamNamed in the standard of care for: Unresectable after chemotherapy (POST-TEXT IV, central vascular involvement), Relapsed/refractory.
- Palliative and supportive care teamNamed in the standard of care for: Very low / standard risk (PRETEXT I-III, resectable, AFP >100), High risk (metastatic, AFP <100, PRETEXT IV, vascular involvement).
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
- 1.Very low / standard risk (PRETEXT I-III, resectable, AFP >100)PHITT / SIOPEL-3 (Lancet Oncol 2013); SIOPEL-6 (NEJM 2018)
Upfront resection for PRETEXT I-II (COG) or cisplatin monotherapy ×4-6 with delayed resection (SIOPEL-3); sodium thiosulfate after each cisplatin dose for otoprotection.
Cisplatin-doxorubicin (PLADO) or dose-dense cisplatin (SIOPEL-4), resection of primary and lung metastases; consider C5VD (COG).
Orthotopic liver transplantation (5-year survival ~80%); early referral to a transplant centre.
Irinotecan-based salvage, surgery for isolated recurrence, transplant if liver-confined; trials.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Epithelial: fetal, embryonal, macrotrabecular, Small-cell undifferentiated, Mixed epithelial-mesenchymal.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Very low / standard risk (PRETEXT I-III, resectable, AFP >100)
- For my situation (very low / standard risk (pretext i-iii, resectable, afp >100)), which of the standard options do you recommend and why?Guideline options include: Upfront resection for PRETEXT I-II (COG) or cisplatin monotherapy ×4-6 with delayed resection (SIOPEL-3); sodium thiosulfate after each cisplatin dose for otoprotection.
- Am I a candidate for Cisplatin, Sodium thiosulfate (otoprotectant), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
High risk (metastatic, AFP <100, PRETEXT IV, vascular involvement)
- For my situation (high risk (metastatic, afp <100, pretext iv, vascular involvement)), which of the standard options do you recommend and why?Guideline options include: Cisplatin-doxorubicin (PLADO) or dose-dense cisplatin (SIOPEL-4), resection of primary and lung metastases; consider C5VD (COG).
- Am I a candidate for Cisplatin, Doxorubicin, Vincristine or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Unresectable after chemotherapy (POST-TEXT IV, central vascular involvement)
- For my situation (unresectable after chemotherapy (post-text iv, central vascular involvement)), which of the standard options do you recommend and why?Guideline options include: Orthotopic liver transplantation (5-year survival ~80%); early referral to a transplant centre.
Relapsed/refractory
- For my situation (relapsed/refractory), which of the standard options do you recommend and why?Guideline options include: Irinotecan-based salvage, surgery for isolated recurrence, transplant if liver-confined; trials.
- Am I a candidate for Irinotecan (and liposomal irinotecan), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Sodium thiosulfate (otoprotectant), Liver transplantation for cancer (Milan criteria and beyond)?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Metastatic and low-AFP disease”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Long-term effects of cisplatin (hearing, kidney) and doxorubicin (heart)”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Hepatoblastoma: the full pageHepatoblastoma is a liver cancer of toddlers, cured in most standard-risk cases with cisplatin chemotherapy and surgery, including liver transplant when the tumour cannot be cut out. Sodium thiosulfate given after cisplatin halves the permanent hearing loss cisplatin causes, and became the first approved otoprotectant in 2022.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- Alpha-fetoprotein (AFP): Alpha-fetoprotein is a protein made by the fetal liver that a substantial share of hepatocellular carcinomas switch back on.
Every term links to the glossary.