@mariouk I am answering as the wife of a patient who had IPMN cysts and Whipple surgery at Mayo Rochester MN a year ago. Despite the sudden shock you have had, I’d like you to feel somewhat reassured, I see so much that is hopeful in your situation. Despite the diagnosis of IPMNs, apart from size and number, you appear to have no other worrisome indicators. My husband’s primary cyst was in the head of his pancreas, about the size of yours, but aside from size,had the additional concerns of nodules, wall thickening and duct dilation. Despite having an EUS and biopsies which became back negative for cancer, after surgery it was revealed there was indeed adenocarcinoma within the cyst. All Surgical margins and lymph nodes were clear. My husbands situation was an incidental finding when having tests for something else, as yours is, and for that we can feel so very lucky. I suspect you are getting recommendation for surgery because of size and extent of your IPMNs, and the real possibility of transformation into malignancy. Because pancreatic cancer is so insidious, so difficult to treat and with an unhappy prognosis, catching it early is a fortunate thing. Many times IPMNs are monitored for changes, but yours is already large. You will soon find out what is recommended in your case. My husband did not need to have a total removal of his pancreas because of the location of the IPMNs in the head—he does have about half of his left. It does not produce enough pancreatic enzymes so he does take Creon, but is still producing insulin so that he doesn’t need that, at least not now. I hope people who have had total removal can reassure you, my guess is the prognosis statistics you cite include all those who also end up with a diagnosis of adenocarcinima, which in fact Is a dismal prospect particularly when it has spread to lymph nodes and beyond. The main thing we know here is that the success of a surgery without complications Is largely dependent on having a surgeon and a hospital that does a large volume of Whipples. I don’t know your situation there. Mayo and Johns Hopkins are well known here in the USA. My husband’s surgeon was Dr Mark Truty. My husband is 74 and eleven months before his Whipple he had open heart bypass surgery and yet, he came through fine. It is not an easy surgery for surgeon or patient, but as you can see from my husband’s case, certainly possible. Even though all evidence of cancer was removed in my husband’s surgery, because of the insidiousness of Pancreatic Cancer he underwent 6 months of rugged chemotherapy beginning two months after surgery. In the US pre-surgery chemo is often administered as well if malignancy is present or to debulk a tumor off blood vessels in order for the patient to qualify for surgery. Now a year later he is regaining strength and has no evidence of disease. Brittle diabetics, those who produce no insulin, as someone without a pancreas would of course experience a major change in life circumstances. But treatment of diabetes with implanted pumps etc is so much improved nowadays that even that is hopeful. The one thing all my husband’s providers said is to be careful about online research. What we find there is often not current, statistics are outdated and don’t reflect the state of care today or the prognosis you should expect. Sending you very best wishes for your future care and healthy life to come. Hug your daugter!

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