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Total pancreatectomy challenges
Pancreatic Cancer | Last Active: Jun 14, 2025 | Replies (14)Comment receiving replies
This paper is focused on total pancreatectomy (TP) for IPMNs but has some applicability to pancreatic cancer as well:
https://pubmed.ncbi.nlm.nih.gov/27215900/
I had Whipple for PDAC 3 years ago; all declared clean at the time, but recurrence at the surgical site within 4 months.
I now wish I had undergone TP either at first diagnosis (instead of Whipple) or immediately after the recurrence. I became dependent on insulin shortly after first diagnosis, and on enzymes after Whipple, so TP would have been nothing worse.
If the entire pancreas had been removed, there would have been no potential for other malignant cells to hide and no more pancreas tissue prone to turning malignant. The surgical site and anastomosis (rejoining remnant pancreas to jejunum) creates a tight and busy intersection of organs. The recurrent tumor eventually grew into my stomach outlet, creating a need for TPN feeding through a central line and a gastric vent (tube coming out of my stomach) that seemingly could have been avoided.
I have zero medical training, and the above is just my own perception of the rear-view mirror, but I think in summary that I would have been better off with TP. Best wishes with your own future!
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The surgeon suspected recurrence at surgical site 6 weeks ago. At that time, he suggested sending tissue for biopsy and then cutting more off the edge of the resected pancreas. Onco objected strongly to tests bec PET scan and MRI clear although CA19-9 markers climbing. We went with onco. Needless to say now that recent PET shows increased cancerous activity at resected edge, surgeon is miffed with us (he has no business being miffed but it is what it is). He is now suggesting he takes out all of the remaining pancreas and deal with any remotely suspicious lumps in the area bec he believes cancer is localised and removing the pancreas means removing any further recurrence. We have not seen onco yet but I am pretty sure she believes cancer is already in the blood and removing the pancreas completely and giving my husband Type 1 diabetes is just going to affect his quality of life. Your experience suggests a TP would be a good idea. You still think that?
My husband was on Gem-Abrax since March 2024 and the good thing about that (although it did not control recurrence) was the constant monitoring of CA19-9 markers (fortnightly to 3-weekly) and PET scans every quarter.