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Appointment sheet: Pancreatic acinar cell carcinoma

One page to bring and write on: your details, the questions for Pancreatic acinar cell carcinoma 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

Pancreatic acinar cell carcinoma

Prepared with OnCo (onco.cc/prep/pancreatic-acinar-cell-carcinoma/). 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 Trypsin, chymotrypsin and BCL10 immunohistochemistry, Serum lipase and alpha-fetoprotein, BRAF or RAF1 fusions, Germline and somatic BRCA2, PALB2, ATM and other homologous recombination genes, Mismatch repair status), 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
  1. 5.For my situation (diagnosis), which of the standard options do you recommend and why?
Resectable
  1. 6.For my situation (resectable), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), FOLFIRINOX / mFOLFIRINOX, and what side effects should I expect?
Advanced
  1. 8.For my situation (advanced), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), FOLFIRINOX / mFOLFIRINOX, Oxaliplatin or related drugs, and what side effects should I expect?
Molecularly selected
  1. 10.For my situation (molecularly selected), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Dabrafenib + trametinib, Olaparib, Pembrolizumab, and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of PDAC organoid pharmacotyping, Comprehensive genomic profiling?
  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 “No prospective trial has ever been completed in acinar cell carcinoma; all systemic therapy evidence is retrospective”. How does that affect my plan?
  5. 16.I read that “BRAF fusions have no approved drug and MEK inhibitor evidence is case reports”. How does that affect my plan?

The words I may hear

  • Homologous recombination deficiency (HRD): A tumour that cannot properly repair double-strand DNA breaks, usually because of BRCA or related gene loss.
  • Oligometastatic disease: Cancer that has spread to only a few places, which may still be curable by treating each spot.
  • 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).
  • Germline BRCA mutation (gBRCA): An inherited fault in the BRCA1 or BRCA2 gene, present in every cell from birth, that greatly raises the risk of breast, ovarian, prostate and pancreatic cancer and makes those cancers sensitive to PARP inhibitors and platinum.
  • Gene fusion: A gene fusion is two genes broken and joined together, creating a hybrid protein that can drive cancer.
  • 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.
  • Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR): Microsatellite instability is the mark of a broken DNA spell-checker (loss of MLH1, MSH2, MSH6 or PMS2) that leaves thousands of mutations, so the tumour displays abnormal proteins that T cells can recognise.

Tests and results to bring

Diagnosis: Biopsy with acinar markers; CT staging; germline testing and comprehensive tumour sequencing with fusion detection for every patient.

Biomarker results to ask for: Trypsin, chymotrypsin and BCL10 immunohistochemistry (diagnosis), Serum lipase and alpha-fetoprotein (markers in a subset), BRAF or RAF1 fusions (SND1-BRAF and others), Germline and somatic BRCA2, PALB2, ATM and other homologous recombination genes, Mismatch repair status, APC or CTNNB1 alterations; KRAS usually wild-type.

Scans and tests linked to this cancer: Comprehensive genomic profiling, CT (computed tomography), Endoscopic ultrasound and EBUS systems, Germline (hereditary) testing, PDAC organoid pharmacotyping.

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