Total Pancreatectomy

I have a question. After your Whipple surgery, which doesn't sound like it was a real Whipple, did you receive chemotherapy, starting within 60 days of your Whipple?

What is your definition to constitute what a "real" Whipple is?

@vector , In my case, 12 rounds of Folfirinox over 6 months was considered "TNT" (TOTAL Neoadjuvant Therapy) and based on the studies they developed that protocol from, Adjuvant therapy was not considered necessary if there were negative margins and lymph nodes from the Whipple and NED afterward. I met all those, and had a clean MRI one month after surgery, followed by two clean Signatera tests and one clean Galleri test two months after that. The only hint something was wrong one month after that was rising CA19-9 (up to a "whopping" 77) but the MRI that accompanied it found a 1.3 cm mass at the original Whipple site (anastomosis where remaining pancreas was connected to jejunum). Even then, an EUS biopsy took 4 samples which were all negative, even though it was indeed a malignant recurrence of PDAC. I asked for a PET scan as a tiebreaker and they said no.

Which leads me to the part for @christie4re : The tumor board recommended doing nothing until after new imaging 6 weeks later, my oncologist didn't recommend chemo without definitive evidence of disease. At the new imaging, the mass was 2 cm and CA19-9 was up to 277, so they concluded it was indeed a malignant recurrence of PDAC, but thankfully they didn't spot any mets. The surgeon didn't want to touch it unless I did 3 months of chemo with good evidence of control first. By the time I got second and third opinions with different imaging, 1 met was spotted and all the surgeons I talked to ruled surgery out.

In hindsight, if I could have gotten surgery to remove the rest of the pancreas at any point (between initial discovery of the recurrence, up to and including the first met), I would have done it. The reason being that the recurrent tumor was very aggressive, and it eventually grew to block my gastric outlet and partially infiltrate the stomach, which have caused numerous complications. I would have attacked the main/worst tumor with the potential to create problems first, and then worried about the met(s) later.

I have no medical training, but that's my experience and perspective. I hope you are still a candidate for the total/remnant pancreatectomy when the time comes, and that you and your doctors are comfortable with it, before it's too late and they start changing their mind.

@vector , In my case, 12 rounds of Folfirinox over 6 months was considered "TNT" (TOTAL Neoadjuvant Therapy) and based on the studies they developed that protocol from, Adjuvant therapy was not considered necessary if there were negative margins and lymph nodes from the Whipple and NED afterward. I met all those, and had a clean MRI one month after surgery, followed by two clean Signatera tests and one clean Galleri test two months after that. The only hint something was wrong one month after that was rising CA19-9 (up to a "whopping" 77) but the MRI that accompanied it found a 1.3 cm mass at the original Whipple site (anastomosis where remaining pancreas was connected to jejunum). Even then, an EUS biopsy took 4 samples which were all negative, even though it was indeed a malignant recurrence of PDAC. I asked for a PET scan as a tiebreaker and they said no.

Which leads me to the part for @christie4re : The tumor board recommended doing nothing until after new imaging 6 weeks later, my oncologist didn't recommend chemo without definitive evidence of disease. At the new imaging, the mass was 2 cm and CA19-9 was up to 277, so they concluded it was indeed a malignant recurrence of PDAC, but thankfully they didn't spot any mets. The surgeon didn't want to touch it unless I did 3 months of chemo with good evidence of control first. By the time I got second and third opinions with different imaging, 1 met was spotted and all the surgeons I talked to ruled surgery out.

In hindsight, if I could have gotten surgery to remove the rest of the pancreas at any point (between initial discovery of the recurrence, up to and including the first met), I would have done it. The reason being that the recurrent tumor was very aggressive, and it eventually grew to block my gastric outlet and partially infiltrate the stomach, which have caused numerous complications. I would have attacked the main/worst tumor with the potential to create problems first, and then worried about the met(s) later.

I have no medical training, but that's my experience and perspective. I hope you are still a candidate for the total/remnant pancreatectomy when the time comes, and that you and your doctors are comfortable with it, before it's too late and they start changing their mind.