Appointment sheet
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
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
16 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 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?
Incidental cyst
- 5.For my situation (incidental cyst), which of the standard options do you recommend and why?
High-risk stigmata
- 6.For my situation (high-risk stigmata), which of the standard options do you recommend and why?
Worrisome features
- 7.For my situation (worrisome features), which of the standard options do you recommend and why?
Surveillance
- 8.For my situation (surveillance), which of the standard options do you recommend and why?
Invasive carcinoma in an IPMN
- 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?
Any stage
- 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
- 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).
- 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.
- Endoscopy (EGD, EUS, ERCP): Looking inside a hollow organ with a camera on a flexible tube, taking biopsies and sometimes treating on the spot.
- 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.
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.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call