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Total pancreatectomy aged 28 - anyone else?

claires1990
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Hi, I'm Claire, I'm 28, and recently underwent surgery for a total pancreatectomy after finding a large psuedopapillary tumour that took over my pancreas. As part of the surgery they took the gall bladder and part of the duodenum, stomach and bile duct. I'm now a Type 3c diabetic (treat as Type 1), have to take Creon for Enzyme Replacement Therapy, and eat 4-5 small meals a day.

Unlike most people, I didn't have pancreatitis or any major symptoms before the surgery. Anyone else have a similar experience? I'm struggling to find any information on total pancreatectomy patients (that isn't from an academic paper), specifically anyone who didn't have pancreatitis before.

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    Hi Claire 

    If you join community.macmillan.org.uk/.../ 

    You will find others who are able to relate more closely to your situation. My wife Anne has pancreatic cancer but has refused any treatment because at 71yrs she is not willing to go through the over all trauma of an operation plus a loss of  quality of life just in order to maybe have an additional 3 and a half years of life. A year ago she was given 6 to 12months to live  but to the present time is finding creon is keeping her weight up whilst still feeling fine apart from a lot of wind and bloating. I hope this helps. Stay safe and positive. 

    Geoff999

     

     

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    Hi Claire 

    If you join community.macmillan.org.uk/.../ 

    You will find others who are able to relate more closely to your situation. My wife Anne has pancreatic cancer but has refused any treatment because at 71yrs she is not willing to go through the over all trauma of an operation plus a loss of  quality of life just in order to maybe have an additional 3 and a half years of life. A year ago she was given 6 to 12months to live  but to the present time is finding creon is keeping her weight up whilst still feeling fine apart from a lot of wind and bloating. I hope this helps. Stay safe and positive. 

    Geoff999

     

     

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