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Total pancreatectomy challenges

Pancreatic Cancer | Last Active: Jun 14, 2025 | Replies (14)

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Profile picture for joiedevivre @joiedevivre

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.

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Replies to "The surgeon suspected recurrence at surgical site 6 weeks ago. At that time, he suggested sending..."

@joiedevivre , sorry for the late reply, but just some thoughts...

The "conventional wisdom" is that surgical removal is the only true "cure" for pancreatic cancer, so I'm always sad when I think of any case where removal of every single malignant cell is not possible.

Of course, surgeons (and entire medical teams) don't want to leave a patient worse off after surgery than they would be without. Dr. Stauffer (Mayo) was pretty clear about that in his response to my question in the other recent discussion thread. I was interested to hear his response, particularly in context to that paper I referenced on TP, because one of its authors (Dr. Christopher Wolfgang) is such a prominent surgeon, and another co-author (Dr. Poruk, a former resident under Dr. Wolfgang) is now one of Dr. Stauffer's colleagues at Mayo.

In my case, despite MRI and rising CA19-9 pointing to recurrence, the EUS biopsy and Signatera tests were both negative at the time, so nobody (except myself) wanted to get too aggressive. My surgeons had said that intraoperative pathology (during Whipple) is not always perfect, and that reaching actual tissue where the tumor was later confirmed would be difficult by EUS given the tight corners in a post-Whipple anatomy. I later started to hear (not sure about my understanding) that sometimes cancer stem cells may already be present but not visibly obvious under the microscope.

I was diagnosed as diabetic (and became insulin-dependent) as soon as my PDAC was found. Six months later, I was also enzyme-dependent as a result of the Whipple. So by the time recurrence was suspected 4 months later, I was already back up to weight and in great health with nothing to lose (insulin-wise or enzyme-wise) in terms of quality of life from removing the rest of my pancreas. I still wish my surgical team had agreed to that approach immediately. So now, in addition to the insulin and enzymes, I'm also "chemo-dependent" (with all the inconvenience and side effects) as well as on never-ending clinical-trial hunts to manage the increasing neuropathy and chemo resistance.

In your husband's case, is there tissue available to get a Signatera test, or possibly another liquid biopsy test available to confirm the presence of cancer cells (ctDNA) in the bloodstream?

If there is no evidence of "spread" (tumors, cancer cells, or ctDNA) outside the localized area already identified, that would seem to support your surgeon's recommendation to proceed with resection, given your husband's otherwise good health. As I mentioned before, I (without medical training) would consider that approach reasonable, given the traffic congestion around the remaining pancreas, and the potential disruption growth of a recurrent tumor in that location could produce. The fewer tumors or cancer cells remaining in the body, the fewer cells there are to reproduce, mutate, or metastasize. My personal opinion, based solely on my personal experience, is that the inconvenience and potential side effects of another surgery would have been worth the cost to be cancer-free; and if there was further spread to other areas, those might be less debilitating and possibly dealt with by other means depending on where they appear (e.g., radiation, histotripsy, surgical resection, brachytherapy, HIPEC, intra-arterial chemo pump, IRE, etc.)

Best wishes to you both. Please keep us posted and share anything you learn!