Appointment sheet
Colloid (mucinous non-cystic) carcinoma of the pancreas
Prepared with OnCo (onco.cc/prep/pancreatic-colloid-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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
12 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example More than 80 percent extracellular mucin pools with floating malignant cells, Intestinal-type IPMN background, KRAS mutation in a minority), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Resectable
- 5.For my situation (resectable), which of the standard options do you recommend and why?
- 6.Am I a candidate for FOLFIRINOX / mFOLFIRINOX, and what side effects should I expect?
Advanced
- 7.For my situation (advanced), which of the standard options do you recommend and why?
- 8.Am I a candidate for FOLFIRINOX / mFOLFIRINOX, Gemcitabine + nab-paclitaxel, and what side effects should I expect?
Any stage
- 9.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 10.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 11.I read that “Rarity: no trial, no registry code, so its share and outcomes come from single centres”. How does that affect my plan?
- 12.I read that “Whether the favourable outlook justifies less adjuvant treatment is untested”. How does that affect my plan?
The words I may hear
- High-risk stigmata and worrisome features of pancreatic cysts (IPMN and MCN surgical criteria): Most pancreatic cysts never become cancer, so doctors watch them and operate only when warning signs appear.
- Distal pancreatectomy (removal of the body and tail of the pancreas, usually with the spleen): Distal pancreatectomy removes the body and tail of the pancreas, the part to the left of the main vessels, usually with the spleen when the cause is 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.
- 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).
- 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
Biomarker results to ask for: More than 80 percent extracellular mucin pools with floating malignant cells (histology), Intestinal-type IPMN background (MUC2 and CDX2 positive), KRAS mutation in a minority (4 of 12 in the defining series).
Scans and tests linked to this cancer: Histopathology & immunohistochemistry, High-risk pancreatic surveillance (CAPS / PRECEDE).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Resectable: Pancreatoduodenectomy or distal pancreatectomy with the IPMN, followed by adjuvant chemotherapy as for ductal adenocarcinoma; the remaining gland is kept under surveillance because IPMN is a field disease. (Whipple procedure (pancreaticoduodenectomy), Distal pancreatectomy (removal of the body and tail of the pancreas, usually with the spleen), FOLFIRINOX / mFOLFIRINOX, Neoadjuvant / adjuvant / perioperative, High-risk pancreatic surveillance (CAPS / PRECEDE))
- Advanced: Treated as pancreatic ductal adenocarcinoma: resection with adjuvant chemotherapy when removable, the chemotherapy rows of the parent page when not; the parent record carries the trials. (FOLFIRINOX / mFOLFIRINOX, Gemcitabine + nab-paclitaxel)
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 browserWhat I was told
Agreed next steps, dates and who to call