Invasive carcinoma arising in an intraductal papillary mucinous neoplasm (IPMN-associated carcinoma)
Prepared with OnCo (onco.cc/prep/ipmn-associated-carcinoma/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
12 on the sheet- 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 Histological type of the invasive componentand of the precursor epithelium, Distance between the IPMN and the invasive carcinoma, GNAS mutationalongside KRAS; TP53 and SMAD4 changes with progression, CA 19-9 and cyst-fluid CEA before surgery), 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?
- 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?
- 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, NALIRIFOX (liposomal irinotecan + oxaliplatin + 5-FU/LV), and what side effects should I expect?
- 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 “No trial has tested whether colloid-type cancers can be spared adjuvant chemotherapy”. How does that affect my plan?
- 12.I read that “Surveillance still misses cancers: the parent cyst page carries the unresolved questions of when to operate and when to stop watching”. How does that affect my plan?
The words I may hear
- Pancreatic intraepithelial neoplasia (PanIN), the microscopic precursor of pancreatic cancer: PanIN is the name for abnormal cells lining the small pancreatic ducts that can, over years, turn into pancreatic cancer.
- R0 and R1 margins in pancreatic cancer: the 1 mm rule and standardised specimen reporting: After a pancreatic cancer is removed, the pathologist checks whether cancer reaches the cut edges of the specimen.
- 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.
- Resection margins (R0 / R1 / R2): Whether the edge of the removed tissue is free of cancer.
- 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: Histological type of the invasive component (tubular, colloid, oncocytic) and of the precursor epithelium (gastric, intestinal, pancreatobiliary, oncocytic), Distance between the IPMN and the invasive carcinoma (associated versus concomitant, Baltimore 2015), GNAS mutation (IPMN lineage) alongside KRAS; TP53 and SMAD4 changes with progression, CA 19-9 and cyst-fluid CEA before surgery.
Scans and tests linked to this cancer: Endoscopic ultrasound and EBUS systems, Histopathology & immunohistochemistry, MRI, 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, distal pancreatectomy or total pancreatectomy according to the extent of duct involvement, with regional lymphadenectomy and adjuvant chemotherapy as for ductal adenocarcinoma; surveillance of the remnant gland. (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), MRI)
- 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, NALIRIFOX (liposomal irinotecan + oxaliplatin + 5-FU/LV))
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.