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Living with cancer· Appointment prep

Appointment sheet: Pancreatoblastoma

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

Pancreatoblastoma

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

15 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 alpha-fetoprotein, Squamoid nests and acinar differentiation on histology; trypsin and BCL10 immunohistochemistry, CTNNB1 mutation or APC loss; nuclear beta-catenin staining, 11p loss of heterozygosity, Germline APC testing where familial adenomatous polyposis is suspected), 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?
Diagnosis and staging
  1. 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Resectable at diagnosis
  1. 6.For my situation (resectable at diagnosis), which of the standard options do you recommend and why?
Unresectable at diagnosis
  1. 7.For my situation (unresectable at diagnosis), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Cisplatin, Doxorubicin, and what side effects should I expect?
Metastatic or relapsed
  1. 9.For my situation (metastatic or relapsed), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Cisplatin, Doxorubicin, and what side effects should I expect?
Survivorship
  1. 11.For my situation (survivorship), which of the standard options do you recommend and why?
Any stage
  1. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  2. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  3. 14.I read that “No prospective trial exists or is likely; treatment is extrapolated from hepatoblastoma and pooled registries”. How does that affect my plan?
  4. 15.I read that “Relapsed and metastatic disease has no established second-line therapy”. How does that affect my plan?

The words I may hear

  • Metastasis: Cancer that has spread from where it started to distant parts of the body, travelling through the blood or lymph.
  • Resection margins (R0 / R1 / R2): Whether the edge of the removed tissue is free of cancer.
  • Cancer cachexia: Severe loss of weight and muscle in advanced cancer that eating more cannot reverse on its own.
  • Grade: How abnormal the cancer cells look under the microscope, from grade 1 (close to normal, slow) to grade 3 or 4 (wildly abnormal, fast).
  • Whipple procedure (pancreaticoduodenectomy): The big operation for cancers of the head of the pancreas: the surgeon removes the pancreatic head, the duodenum, the gallbladder and part of the bile duct, then reconnects everything.
  • Neoadjuvant / adjuvant / perioperative: Neoadjuvant therapy is treatment given before surgery, adjuvant therapy is treatment given after it, and perioperative therapy is both.

Tests and results to bring

Diagnosis and staging: Imaging of abdomen and chest, serum alpha-fetoprotein and biopsy; genetic review for Beckwith-Wiedemann syndrome and familial adenomatous polyposis.

Resectable at diagnosis: Complete resection (pancreatoduodenectomy or distal pancreatectomy); adjuvant chemotherapy after incomplete resection.

Unresectable at diagnosis: Neoadjuvant cisplatin and doxorubicin (PLADO, as in hepatoblastoma) followed by delayed resection when the tumour shrinks.

Biomarker results to ask for: Serum alpha-fetoprotein (raised in most; response and relapse marker), Squamoid nests and acinar differentiation on histology; trypsin and BCL10 immunohistochemistry, CTNNB1 mutation or APC loss (Wnt pathway); nuclear beta-catenin staining, 11p loss of heterozygosity (Beckwith-Wiedemann locus), Germline APC testing where familial adenomatous polyposis is suspected, CT or MRI of abdomen and chest for staging.

Scans and tests linked to this cancer: CT (computed tomography), Germline (hereditary) testing, MRI.

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

The treatments I may be offered

  • Metastatic or relapsed: Cisplatin and doxorubicin-based chemotherapy with resection of residual disease where possible; radiotherapy for unresectable residual tumour; international registry enrolment. (Cisplatin, Doxorubicin, Metastasis)
  • Survivorship: Lifelong follow-up for pancreatic insufficiency, diabetes and the late effects of platinum and anthracycline chemotherapy. (Oncofertility and fertility preservation, Cancer cachexia)

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