September 9, 2019

Klik hier voor de Nederlandse versie..

Pancreatic cancer is one of the deadliest forms of cancer. Every year 95,000 people in Europe die from pancreatic cancer. In the Netherlands that is 8 to 10 people a day. Because survival is so low, the prevention of pancreatic cancer in high-risk groups may be preferable above early detection and treatment.

For patients living with the knowledge that they have a high risk of developing pancreatic cancer due to heredity or other causes, this is a considerable mental burden. For that reason, the Patient Advocates of Living With Hope and Inspire2Live, doctors and researchers of the DPCG (Dutch Pancreas Cancer Group) asked whether preventive intervention for high-risk groups could become an option. This question was partly prompted by the fact that the risk of death when removing the total pancreas (total pancreatectomy (TP) is now low and there are also opportunities to largely take over the function of the pancreas with medication and an artificial pancreas.

Following the request for preventive intervention, a decision-making program has now been developed for high-risk patients using decision tables for the total removal of the pancreas (prophylactic total prancreatectomy (PROPAN program)). Participants will go through different phases during the PROPAN program. First a combined consultation with a gastroenterologist and pancreas surgeon will take place to inform the patient extensively and answer questions. The patient’s situation will then be discussed in a PROPAN expert panel consisting of a clinical geneticist, surgeon, gastroenterologist, internist / diabetologist and psychologist. This expert panel checks whether the patients meet the criteria for total pancreatectomy. If this is the case, a consultation will take place with a diabetes nurse and a conversation with a patient who has already undergone a total pancreatectomy. The surgeon will then inform the patient about the procedure, the expected course after the operation and the risk of complications. Based on all information that the patient has received, it is up to him or her to choose whether or not to have a prophylactic total pancreatectomy.

Patients are advised to undergo this procedure at the age of about fifty years and ten years before the peak incidence of pancreatic cancer development.

The first group of patients eligible for the PROPAN program are patients with Heriditary pancreatitis. If you have Heriditary pancreatitis and you want to participate in this program, please contact me via:

Jolanda Glas

Patient Advocate Inspire2Live