Total pancreatectomy challenges

@joidevie
This decision of going back for surgery and when should depend greatly on your husband’s overall health. If the pancreas is continuing to light up on PET and now MRI, I do see your surgeon’s point. But, it only takes a few “escapees” into your blood stream for metastasis. My pancreas tumor was “dead” when removed. I already had liver tumors at that point, but the surgeon used a technique to kill most of them. Then we did resection. I am still dealing with a “ pop up”.
Surgery done early definitely effects control, as does neo adjuvant chemo ,
FYI-I too have a very confident, strong surgeon and I love having him on my team. He has been aggressive with me, talks straight, and I asked for it! I was determined to fight and was deemed healthy enough to do it. But I did go out for second opinions (from other surgeons) .

I underwent the total removal of my pancreas, spleen, small intestine, gallbladder, appendix, 5 lymph nodes, part of my liver and stomach last September. I was diagnosed with stage 3 pancreatic cancer last August and my medical team recommended this full aggressive approach as I was in otherwise great health, albeit I’m 70 years old and a non smoker. Overnight I became a type 3 diabetic but have learned to deal with the no alcohol, no carbonated beverages and no gummies lifestyle without too much ado. Actually, the diet changes have helped me with putting the cancer in the rear view mirror.

I dropped 40 lbs from 190 down to a low of 150 in two months. Have gained back 6 lbs and that might be all I’m going to regain. I can’t moan too much about it as one of my reviving scores was 87, very good in my books!

I’ve had three separate rounds of chemo since November. Each building up another layer of neuropathy which seems to be the result of the chemo. After each round of chemo my neuropathy got worse. To the point now where I can’t feel much of anything at the fingertips or toes.

Had another ct scan yesterday and it came back very clear so we are stopping the chemo treatments and focusing on getting my life in order again.

As for the diharrea, mine got progressively worse over the past three months and recently my oncologist put me on diphenoxylate to deal with this problem. Very small pills and Theodore’s of 2 pills throughout the day has really firmed up my stools.

I’m very positive on the whole removal process as I see it helping me with my life timeline being extended because of it.

Dennis A

I would highly suggest you get a second opinion from Dr. Dr. Evans, in Wisconsin. He does 180 Whipples a year and is also a vascular surgeon. He’s at Froedtert medical college of Wisconsin. MCW

@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!