Intraductal papillary mucinous neoplasm and other pancreatic cystic precursors
Prepared with OnCo (onco.cc/prep/ipmn-cystic-precursors/). 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
16 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 MRI with MRCP or pancreas-protocol CT: cyst size, main duct diameter, mural nodules, growth rate, Endoscopic ultrasound with cyst fluid CEA, glucose, cytology and KRAS, GNAS and other mutations, Serum CA 19-9, New-onset diabetes or pancreatitis, Histological subtype of resected IPMNand grade of dysplasia), 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 (incidental cyst), which of the standard options do you recommend and why?
- 6.For my situation (high-risk stigmata), which of the standard options do you recommend and why?
- 7.For my situation (worrisome features), which of the standard options do you recommend and why?
- 8.For my situation (surveillance), which of the standard options do you recommend and why?
- 9.For my situation (invasive carcinoma in an ipmn), which of the standard options do you recommend and why?
- 10.Am I a candidate for FOLFIRINOX / mFOLFIRINOX, and what side effects should I expect?
- 11.How do the results of PRODIGE 24 / CCTG PA6 apply to someone like me?
- 12.Are there clinical trials I could join, for example of Stop watching stable low-risk pancreatic cysts after five years, Blood-based pancreatic cancer detection in new-onset diabetes, New diabetes after 50 plus weight loss triggers a pancreatic cancer check, AI that spots pancreatic cancer on scans taken a year before diagnosis?
- 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 15.I read that “Most cysts never progress, and no test yet identifies the minority that will”. How does that affect my plan?
- 16.I read that “Surveillance of a common incidental finding is costly and causes anxiety, and when it can safely stop is unknown”. How does that affect my plan?
The words I may hear
- Familial pancreatic cancer and inherited risk (who qualifies for surveillance): Familial pancreatic cancer means at least two close relatives on the same side of the family have had the disease without a known gene fault to explain it.
- 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.
- New-onset diabetes as a signal of pancreatic cancer (and the ENDPAC score): A pancreatic cancer can cause diabetes before any other symptom, so new diabetes after the age of 50, especially with weight loss rather than weight gain, is a recognised warning sign.
- Pancreas protocol CT (pancreatic protocol CT, dual-phase thin-slice CT with structured reporting): A pancreas protocol CT is a scan tuned for the pancreas: thin slices taken at two timed moments after contrast dye so that the tumour, the arteries and the veins all show up sharply.
- 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.
- Resectable, borderline resectable and unresectable: The surgeon's verdict on whether the tumour can be completely removed.
- Obstructive jaundice and biliary obstruction: Yellowing of the skin and eyes because a tumour blocks the bile duct, most often pancreatic or bile duct cancer.
- CA 19-9: A sugar molecule shed into the blood by most pancreatic cancers; useful to follow treatment, not to screen.
- 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.
- Endoscopy (EGD, EUS, ERCP): Looking inside a hollow organ with a camera on a flexible tube, taking biopsies and sometimes treating on the spot.
Tests and results to bring
Biomarker results to ask for: MRI with MRCP or pancreas-protocol CT: cyst size, main duct diameter, mural nodules, growth rate, Endoscopic ultrasound with cyst fluid CEA, glucose, cytology and KRAS, GNAS and other mutations, Serum CA 19-9 (worrisome feature when raised), New-onset diabetes or pancreatitis (worrisome features), Histological subtype of resected IPMN (gastric, intestinal, pancreatobiliary) and grade of dysplasia, TP53, SMAD4 and CDKN2A alterations in cyst fluid (investigational markers of progression).
Scans and tests linked to this cancer: Comprehensive genomic profiling, CT (computed tomography), Endoscopic ultrasound and EBUS systems, Liquid biopsy (ctDNA), MRI, DNA methylation profiling.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- High-risk stigmata: Resection (pancreatoduodenectomy or distal pancreatectomy) for obstructive jaundice, an enhancing mural nodule of 5 mm or more, a main duct of 10 mm or more, or positive cytology, in patients fit for surgery. (Whipple procedure (pancreaticoduodenectomy), Obstructive jaundice and biliary obstruction, Robotic & minimally invasive surgery)
- Incidental cyst: Characterise with MRI and MRCP or pancreas-protocol CT; endoscopic ultrasound with fluid analysis when the cyst type is unclear or worrisome features are present. (MRI, CT (computed tomography), Endoscopic ultrasound and EBUS systems, CA 19-9)
- Worrisome features: Endoscopic ultrasound and fluid sampling; resection or short-interval surveillance depending on findings, age and fitness. (Endoscopic ultrasound and EBUS systems, CA 19-9, MRI)
- Invasive carcinoma in an IPMN: Staged and treated as pancreatic ductal adenocarcinoma with resection and adjuvant chemotherapy. (Whipple procedure (pancreaticoduodenectomy), FOLFIRINOX / mFOLFIRINOX, PRODIGE 24 / CCTG PA6)
- Surveillance: MRI or endoscopic ultrasound at intervals set by cyst size, continued while the patient remains a surgical candidate; the remaining pancreas is followed after resection. (MRI, High-risk pancreatic surveillance (CAPS / PRECEDE), Endoscopic ultrasound and EBUS systems)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.