Total pancreatectomy aged 28 - anyone else?

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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  • how have u been since ur total pancreatectomy can u live life as normal now and do normal things 

  • Hello Dennis and welcome to the Cancer Chat community.

    I just wanted to stop by as I noticed you were trying to get in touch with claires1990.

    Unfortunately they haven't been on the forum since 2021 so there's a chance you may not hear back from them.

    I really hope that won't be the case, but if you don't receive a reply you could try reaching out to other members on more active and recent discussions about this topic or you could start your own. To find out, just click here.

    In the meantime, if you have any questions, our cancer nurses are available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. You may also be able to get further information and advice, and connect with others who have had this surgery on Pancreatic Cancer UK.

    Kind regards,

    Steph, Cancer Chat Moderator

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  • Hello Dennis and welcome to the Cancer Chat community.

    I just wanted to stop by as I noticed you were trying to get in touch with claires1990.

    Unfortunately they haven't been on the forum since 2021 so there's a chance you may not hear back from them.

    I really hope that won't be the case, but if you don't receive a reply you could try reaching out to other members on more active and recent discussions about this topic or you could start your own. To find out, just click here.

    In the meantime, if you have any questions, our cancer nurses are available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. You may also be able to get further information and advice, and connect with others who have had this surgery on Pancreatic Cancer UK.

    Kind regards,

    Steph, Cancer Chat Moderator

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