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Benign or Malignant IPMN? What to do next?

Pancreatic Cancer | Last Active: Apr 8, 2023 | Replies (79)

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@mariouk

Hi @carlz first of all I am sorry for what you are going through and I do very well understand the fears as I am the author of the post. To help you, I would like to politely challenge you if thats ok 🙂 . As well I do apologize in advance if my 1 point has offended anyone.

1. IPMN are NOT definite pre-cancer indicator at all. They are indeed cysts that can carry a risk but they are not cancer or mean they will turn into cancer. If that was the case, pancreatic cancer would have been the most common cancer and by far the largest death cancer cause. Because PC is one of the less common cancers, is why unfortunately it does have such a low survival rate as there has been less focus, financial investment, etc.
2. I could be mistaken but there isnt any certainly that indicated that IPMNs come back. I am member of a Facebook group that focus on IPMNs only and 99% of the members there havent had new IPMNs appear (over 1000 members)
3. Precursors are indeed a weakness regarding IPMNs and if I may say you are a good example as the docs took a calculated risk to undertake the surgery and now they know it was not cancer. It sucks that we can land and communicate with robots in Mars but we dont have a definite 100% indicator if a specific IPMN can turn or not. It sucks !

Again great news that you didnt have cancer and you most likely never do from an IPMN. You are young and you are under great medical care and you have options. You are an inspiration to people like myself as you have had the operation and you are doing well! I am trusting my medical team that they changed their view from lets remove your whole pancreas to you are now a very low risk. Will I ever know for sure if that was a stupid or an clever decision I dont know and I hope I will never find out?

The mojo of the Facebook group is that "You will die with an IPMN in you but not from the IPMN"

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Replies to "Hi @carlz first of all I am sorry for what you are going through and I..."

I agree. My friend had IPMN removed thru Whipple procedure last year. He
had a hernia which is not uncommon afterward. Second surgery needed all
successful no cancer. He is very well now and out on his boat like usual.
It is far better to know for sure....always listen to your body!