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@markymarkfl

@steffi2 Sorry to hear about your diagnosis, but welcome to our club. I hope/recommend they order germline and somatic DNA tests as well as CA19-9 for you before they start any treatment. The genetic results may take longer to get back than you can wait before beginning treatment, but the results can at least help understand if you're on an appropriate treatment plan or not (or what the next step might be).

The Whipple was not easy, but I wouldn't call it awful. Recovery from and recurrence after Whipple (including 1.5 years of extra chemo) were easier for me physically/medically than they were psychologically. I'm still a very healthy Stage-IV 61 year old working full time. (And disclaimer -- I have zero medical training.)

But even the "venerated" Whipple (assuming your tumor is in/near the head of the pancreas) might not be right for you. You might consider total pancreatectomy for reasons discussed in https://pubmed.ncbi.nlm.nih.gov/27215900/

You might also find that one of the "cancer vaccine" classes of treatment are appropriate, but that starting chemo first could disqualify you from relevant trials.

Everyone is different, but the "Standard of Care" treatments tend to produce "standard" results. If you have access to a pancreatic cancer center of excellence (e.g., Mayo, MD Anderson, Johns Hopkins, NY Langone) I would suggest you try to book an appointment there immediately.

Also, get all the imaging you can (PET, CT, MR) with pancreas-specific protocols at the best centers with the best equipment and best radiologists you can. You need a really good baseline to make the best treatment decisions.

Regarding surgery, there is a lot of debate about whether neoadjuvant chemo is appropriate/necessary (and if so, how much). Good discussions on each side from prominent doctors (Vandy and MDACC) here:



I missed out on a possible second surgery due to last-minute discovery of a distant metastasis in my abdomen, but some surgeons will take those on as part of a CRS/HIPEC procedure.

Regardless of any pre-surgical treatment you receive (even if "Total Neoadjuvant Therapy"), I would recommend supplementing that with adjuvant therapy and VERY frequent, detailed monitoring (more CA19-9 tests, ctDNA tests, imaging) as the PDAC beast has a very sneaky tendency to come back. The intra-operative and post-op pathology can miss malignant cells or simply not contain malignant cells despite them being elsewhere in your body. Early detection and treatment provides the best chance for a positive outcome.

I wish all the best for you, and hope you can share anything you learn or anything you need with us here.

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