The first 60 days: Intraductal papillary mucinous neoplasm and other pancreatic cystic precursors
Intraductal papillary mucinous neoplasms are fluid-filled growths in the pancreatic ducts that make mucus and can slowly turn into pancreatic cancer, one of the few chances to catch pancreatic cancer before it starts. Most are watched with scans for years, and surgery is reserved for the ones with warning signs such as a widened main duct, a solid nodule inside the cyst or jaundice. Below, week by week, is what OnCo's record of Intraductal papillary mucinous neoplasm and other pancreatic cystic precursors says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: Incidental cyst, Worrisome features, Surveillance.
- RadiologistNamed in the standard of care for: Incidental cyst, Worrisome features, Surveillance.
- SurgeonNamed in the standard of care for: High-risk stigmata, Worrisome features, Surveillance, Invasive carcinoma in an IPMN.
- Medical oncologistNamed in the standard of care for: Invasive carcinoma in an IPMN.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
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.
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.
Endoscopic ultrasound and fluid sampling; resection or short-interval surveillance depending on findings, age and fitness.
Staged and treated as pancreatic ductal adenocarcinoma with resection and adjuvant chemotherapy.
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.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Main-duct IPMN, Branch-duct IPMN without worrisome features, Branch-duct IPMN with worrisome features or high-risk stigmata.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Incidental cyst
- For my situation (incidental cyst), which of the standard options do you recommend and why?Guideline options include: 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.
High-risk stigmata
- For my situation (high-risk stigmata), which of the standard options do you recommend and why?Guideline options include: 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.
Worrisome features
- For my situation (worrisome features), which of the standard options do you recommend and why?Guideline options include: Endoscopic ultrasound and fluid sampling; resection or short-interval surveillance depending on findings, age and fitness.
Surveillance
- For my situation (surveillance), which of the standard options do you recommend and why?Guideline options include: 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.
Invasive carcinoma in an IPMN
- For my situation (invasive carcinoma in an ipmn), which of the standard options do you recommend and why?Guideline options include: Staged and treated as pancreatic ductal adenocarcinoma with resection and adjuvant chemotherapy.
- Am I a candidate for FOLFIRINOX / mFOLFIRINOX, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of PRODIGE 24 / CCTG PA6 apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Any stage
- 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?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Most cysts never progress, and no test yet identifies the minority that will”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- 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?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Intraductal papillary mucinous neoplasm and other pancreatic cystic precursors: the full pageIntraductal papillary mucinous neoplasms are fluid-filled growths in the pancreatic ducts that make mucus and can slowly turn into pancreatic cancer, one of the few chances to catch pancreatic cancer before it starts. Most are watched with scans for years, and surgery is reserved for the ones with warning signs such as a widened main duct, a solid nodule inside the cyst or jaundice.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- 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.
Every term links to the glossary.