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Mario (@mariouk)

Benign or Malignant IPMN? What to do next?

Pancreatic Cancer | Last Active: Dec 13, 2021 | Replies (66)

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@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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Replies to "@mariouk I am answering as the wife of a patient who had IPMN cysts and Whipple..."

Hey all and thanks ! After writing to you something ticked on inside me and I am the old Mario full of energy and now positivity ! Instead of reading studies , which are good when they are up to date and make sense I decided to read at the successful stories of actual patients ! As well I change my view of mortality vs success rate in the UK total which I did start with this post. I do appreciate and envy the success rate of Mayo and John Hopkins hospital which is around 99.02% but as I have learned with my situation 97% is extremely good ! I am still very very scared of the operation and if they find cancer which I think any human would be 🙂

What I then decided to do is contact a work colleague that I do recall been very proud of his insulin pump and I had a very long chat with him and he reassured me that life as a diabetic is not as bad as it used to be especially if you have self control and appreciate your position! Diabetic over cancer sorry I will take diabetic anytime 🙂 . He really opened my eyes and I will miss the freedom but again I will have unlimited hugs which are priceless.

My main concern now is if it is cancer and it has been misdiagnosed but from what I am reading you might have to get the pancreas out to be 100% !

Thank you so much for the time taking to reply and I hope @susan2018 your hubby is well 🙂

I do appreciate I will have a good days and bad days but today I spend a lot of time laughing and even played with my little priceless monkey when she was not stuck in front of the tv ! Maybe I am lucky that it was found this way and I hope that my news next week will keep me positive ! It’s going to be a very long journey but that will make me a better person and sometime I took life for granted (I always loved life but now I appreciate it).

Looking forward to getting to meet more of you and maybe help others

Pls ignore typos as I am trying to put monkey to bed 🙂

@susan2018 If I may say I am curious what were the lessons learn and how the tests missed the cancer? While I am waiting for the decision and I have accepted the chance of an operation I am kind of person that needs data , I am an IT consultant so I will be first pushing for a EUS/FNA and I will push for an ERCP but if that is not a certainly then maybe I shouldnt play with fire . Did your hubby do an ERCP as I believe (could be wrong) that one checks for the duct cancer?