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@vcrkv2024

I had pncratic tail resection 3 months ago, diagnosed with stsge 1b, R0, post-surgery CA 19.9 of 5. All lymphs and margins are negative. Now, I am thinking not to go through chemo. Is anyone else in the same situation? Appreciate any thoughts.

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Replies to "I had pncratic tail resection 3 months ago, diagnosed with stsge 1b, R0, post-surgery CA 19.9..."

@vcrkv2024 , After 12 rounds of neoadjuvant Folfirinox on a Stage-2 PDAC in the head of my pancreas, my R0 Whipple was also clean in 22/22 lymph nodes tested.

I figured along with the lower post-op CA19-9, 2 negative Signateras and a negative Galleri, and my oncology team's agreement that no adjuvant therapy was necessary, I was NED enough to go along with that. Who wants chemo when you're NED?

Well, within 4.5 months of the Whipple, I was ED (MRI showed tumor at 1.3 cm), and by the time follow-up MRI and other tests confirmed it 7 weeks later, I was Stage-4.

Everything I've read since then suggests if you can stand adjuvant treatment after surgery, you should probably do it.

Given the number of recurrences that happen at the original surgical site, and my ATM mutation making recurrence more likely, I would have opted to have the entire pancreas removed in the first place instead of just a Whipple.

There are some smart people addressing it in the paper in the context of IPMNs:
https://karger.com/dsu/article/33/4/335/117924/Is-It-Time-to-Expand-the-Role-of-Total

That was exactly my outcome. My friend was the same a few years prior and did the chemo follow up. It gave her 4 and a half years. So I quit chemo after having 1 treatment post surgery. Now I’m dealing with possible metastases 1 year from diagnosis. Damed if you do, damed if you don’t. Every person is different. If you choose to stop, find a good integrative oncologist. There was not one in my area

One thing to consider is what is called minimal residual disease (MRD). Although the cancer was caught early, it was not stage Ia. Pancreatic cancer is the one cancer in which metastatic disease occurs much earlier than other cancers. Another question-was the tumor an exocrine cancer like ductal adenocarcinoma or a neuroendocrine type that is less aggressive.

I reflect on my experiences the past 11.5 years as a stage IV survivor that did have the Whipple. I went into surgery at stage IIb but micrometastatic disease was not detected and in the two weeks that transpired since the initial diagnostic CT and no chemo, those cells grew and I was now facing metastatic disease to the liver. It took aggressive chemotherapy rarely done that I had to advocate for the save my life. I went through the challenge of a Whipple and wasn’t going to let the effort be for naught.

In your situation, the options are do some adjuvant chemo as added insurance in case there is minimal residual disease that is too small to be detected by conventional imaging. There is the ctDNA blood test that checks for MRD but is not 100% accurate and might not detect molecular levels of malignant cell DNA fragments in the circulation. It is most accurate in patients that had a genetic mutation with those that have a BRCA mutation having a detection sensitivity of 89%.

Looking back, I often shake my head in disbelief at those that were diagnosed at earlier stages (Ia & Ib) and no longer here. Having been stage IV, I had to do well beyond standard of care cycles that ended up being 46 cycles over 24 months. I had no choice as that’s what I was willing to do to survive. What I now know, doing adjuvant chemo is a lot easier than what I had to endure. The oncologist may be able to find statistics in the seer.gov database broken down by stage and sub-stage of the percentages of 5 year survival and whether is also details whether adjuvant chemo was administered after surgery.

For many, Whipple has become a “one and done” situation. Many long term survivors speak to this. And, your nodes were negative so that is a positive sign! Some with pancreadectomy are one and done too!! however, I view this as a chronic disease and if you are healthy otherwise, I would definitely do chemo. If your doctors are recommending.