Table 1.
Decision table for patients to discuss prophylactic total pancreatectomy in main-duct/mixed-type IPMN.
| Frequently asked questions | Repeated check-ups | Total pancreatectomy |
|---|---|---|
| What does my possible treatment entail? | After you are diagnosed with IPMN, every 6 to 12 months you will get an MRI or EUS, which detects whether there is cancer in the pancreas.1 | Your entire pancreas will be removed using a minimally invasive approach (if considered possible by the surgeon). Conversion to open surgery occurs in approximately 6 out of 100 patients. In addition, one in 10 people also need to have their spleen removed. Patients in whom IPMN is diagnosed before 55 years will undergo a total pancreatectomy around their 55th birthday.2,3 Surgery at a younger age is possible in the case of a relative or absolute indication for partial pancreatectomy. |
| What is my risk of getting pancreatic cancer? | If a benign main-duct IPMN becomes malignant, this usually occurs within 5 years.2 After the diagnosis of main-duct IPMN, 60 out of 100 people (60%) will get pancreatic cancer.4 This may also occur after 5 years. | There is no more pancreatic tissue present in which you can get cancer. |
| What is my risk of dying? | It has not yet been proved that repeated check-ups reduces this risk. Cancer could be found at an early stage or in a precancerous stage. When cancer is present and you are being operated, the cancer will return in 70–80% of the patients within 5 years.5 | A total of 2–5 out of 100 people will die from complications due to the operation in very high-volume pancreatic surgery centres. Death rates are higher in other centres and for this reason the programme will only be conducted in very high volume centres. |
| What are the consequences/ complications? | You will be visiting the hospital two to four times a year for check-ups. If on the MRI (or EUS) imaging a lesion in the pancreas is detected, you will undergo surgery. Afterwards, this lesion may turn out to be a non-life-threatening lesion. There will be ongoing uncertainty. | After surgery, you will have diabetes in a serious form. In addition, you will get a shortage of digestive juices, for which you need to take two to four tablets of pancreatic enzymes at each meal. |
| What is my risk of getting diabetes? | 18 out of 100 people will get diabetes.6 | All, 100 out of 100 people will get insulin-dependent and unstable diabetes. This is a serious type of diabetes, for which insulin injections are necessary. |
| What more should I know about diabetes? | Due to your illness, your pancreas is affected and diabetes can develop. When this happens and at what age is unpredictable. | Treating and dealing with diabetes will be an important part of your life. You need to calculate the amount of insulin you need four to six times a day based on your diet and self-measured sugar levels. You must inject the insulin and measure your sugar levels by means of finger pricks, an insulin pump and/or glucose monitoring devices. |
| After surgery, how much time will it take for me to recover fully? | Not applicable. | You will stay in the hospital for about 1 to 2 weeks if there are no complications (in about half of the patients). If complications occur: 2 to 3 weeks. Complete recovery takes about 3 months. |
1Del Chiaro et al. European evidence-based guidelines on pancreatic cystic neoplasms. Gut 2018; 67: 789–804.
2Sohn et al. Intraductal papillary mucinous neoplasms of the pancreas. Ann Surg 2004; 239: 788–799.
3Winter et al. Recurrence and survival after resection of small intraductal papillary mucinous neoplasm-associated carcinomas (<=20 mm invasive component): a multi-institutional analysis. Ann Surg 2016; 263: 793–801.
4Salvia et al. Main-duct intraductal papillary mucinous neoplasms of the pancreas clinical predictors of malignancy and long-term survival following resection. Ann Surg 2004; 239: 678–687.
5Marchegiani et al. Patterns of recurrence after resection of IPMN who, when, and how? Ann Surg 2015; 262: 1108–1114.
6Julie et al. Intraductal papillary mucinous neoplasms and the risk of diabetes mellitus in patients undergoing resection versus observation. J Gastrointest Surg 2015; 19: 1974–1981.
IPMN: intraductal papillary mucinous neoplasm; EUS: endoscopic ultrasound; MRI: magnetic resonance imaging.