Recent diagnosis: Have questions about treatment options?

So much good insight here! Every single case is different and approaches are closely tied to your current health, genetic characteristics, involvement of lymph nodes, and location of primary tumor.
One approach has not been mentioned. It is nanoknife. Not all surgeons are trained in this method for the pancreas, as it is a newer approach . Even highly qualified surgeons at centers of excellence may not be doing it yet. Please look into this . Having very good success with less downtime.
Tumor testing can tell you which chemo treatment is likely to work better for you. In your case. You would not know until after surgery. But, a CT DNA test would be helpful to highlight if it is already in your bloodstream. This is done by a simple blood test. A PET scan should be suggested as well. With CT DNA positive, an active PET and CA19-9 marker, the doctors then have enough data points to make good assumption of local only, or some spread since a biopsy isn’t possible.
Statistics don’t tell the story. Survivors do! Plan to be one of the 13% that make it! You were diagnosed early and can do this!
I was “labeled” stage IV 3 years ago! It’s a journey for sure, but I have never stopped working, volunteering, and giving thanks to the Lord above for putting the right people in my path.
You can do this!

mrajat,
I am not advocating for a particular treatment plan or provider, I know nothing about what’s best for you.

You wrote,
“I asked both the surgeon at MSK and U. Penn whether PET scan is needed and they both advised against it. I wonder if that was not to disqualify me in lieu of a possible false indication of metastasis.”
My thought,
Heard if PC has spread to other organs then having surgery, rushed or not, may not help you but can actually hurt you.
How can it be in your best interest to not use all available medical technology?
Why guess at what you’re dealing with?

The best available information should help you make the best informed decision.

Are you being rushed?
Your treatment path is a critical decision, you may only get one chance.
With PC time is of the essence but maybe not if you don’t have all available information.

As I mentioned my wife is currently being treated at Mayo.
She gets extensive blood test before every chemo in addition to CT and PET-CT scans at initial diagnosis as well as after every 4th chemo session to see what’s going on and judge effectiveness of chemo treatment to see if a chemo switch is needed.

FYI, Mayo believes in the benefits of PET scans, maybe doing chemo first influences that?

From the Mayo Clinic Health Letter, January 2021,
Pancreatic cancer
New treatments, better outcomes.

“We have incorporated positron emission tomography (PET) scans heavily into our practice to judge effectiveness of chemotherapy. If the tumor is dead on a PET scan after chemotherapy, we have a much better predictor of that person's survival before considering surgery. This has been game-changing for people with pancreatic cancer.”

“Many thought that if a person didn't respond to initial chemotherapy then he or she wouldn't respond to any chemotherapy. This was false. A significant portion of our patients undergo a switch in chemotherapy. This has also been practice-changing.”

You can watch the PBS documentary by Ken Burns,
The Mayo Clinic
Faith • Hope • Science
on TV today in your own home (with PBS donation) and/or you can buy the book and read it online today or in paper form this week.
It mentions and highlights
Mayo’s method of treating Pancreatic Cancer.

The film/book also emphasizes two long established points about The Mayo Clinic:
The elder Dr Mayo had a simple philosophy he tried to impart on his two sons:
“The needs of the patient come first.”
and
Every physician at Mayo Clinic is on salary and have no financial benefit for ordering extra test or procedures.

Again, I am not trying to sway you to Mayo, I know nothing about what’s best for you and you are already being seen by two excellent institutions with excellent experienced physicians.

In poker terms, you and my wife and all who have PC were dealt bad starting cards.
While unfortunate, now the question is how do you play those cards?
You can still win poker and PC with bad starting cards.

We hear of health benefits of taking vitamins D3 & K2 to help your immune system in fighting cancer and getting yourself in best shape to heal.

I will end where I started.
I am sorry for my rambling. I do not want to confuse or overwhelm you.
I am not advocating for a particular treatment plan or provider, I know nothing about what’s best for you.

God bless and good luck.

I see you have already received some very helpful and insightful replies. Just wanted to say your story sounds similar to mine, in many aspects. Diagnosed just shy of 40 with a 6 and 9 year old in 2022. Healthy, ran a couple half marathons, no risk factors or family history. Had mild upper abdominal and back pain. CA-19 at diagnosis was 174. First deemed borderline resectable, then non-resectable by a local surgical oncologist (with very little experience!). The neo-adjuvant chemo vs surgery first is debatable. Had I been offered surgery first (especially at a facility such as MSK), I likely would have done it. Just because the constant fear and anxiety of the cancer spreading during chemo/prior to surgery was very overwhelming. However, I would absolutely recommend adjuvant chemo, even with clean margins and clear lymph nodes! Good luck to you!

Thanks for sharing Ashley! Wow, you were even younger than me at diagnosis. How long has it been for you and how are you doing now?

Did you mean to say you would advocate adjuvant even when borderline ressectable? That seems to be the case for me since there the tumor is overlapping pancreatic head and bile duct and close to the portal vein. There is some lymph node involvement but it's not clear and the two surgeons have differing opinion about it.

I had my final diagnosis on a Friday afternoon, signed the documents and then found out the surgeon wanted to do the Whipple the next morning- a Saturday. The reason that there was no time to do adjuvant chemo is that the CT and EUS showed the tumor was extremely close to the portal vein and with the tumor deemed extremely aggressive-there was a very small window of opportunity before the tumor would have encased the portal vein resulting the staging becoming locally advanced, un-resectable. On my request, I asked for the surgery to be scheduled two days later on a Monday morning so a family member could arrive to serve as my caregiver.

At the start of surgery, it was noted the tumor was already abutting the portal vein. The surgical team of three had two that did liver transplantation as well and had vascular surgery skills. A consult with the pathologist is attendance concurred to continue the Whipple with portal vein resection. Surgical pathology of the section of portal vein removed revealed the tumor had already penetrated it, and a week later, a CT revealed metastatic disease in the liver. It grew enough in the two week time frame when the first diagnostic CT was done where the micrometastatic disease was below the detection limit until first became detectable. Had it been seen upon the initial diagnostic scan, the Whipple would not have occurred and death likely would have resulted from ensuing esophogeal varices that would have developed and caused a massive hemorrhage and hypovolemic shock. Thankfully I did not insist on having a PET scan. Had it detected metastatic spread, there would not have been the Whipple procedure and not as good an outcome would have been the result- likely mortality within 6-8 months.

Surgical recuperation required 8 weeks because of the added vascular resection. Chemo could not start until 8 weeks and that meant having metastatic disease growing uncontrolled. What were small areas of disease throughoutbthe liver turned into six sizable tumors with many smaller areas too numerous to count. It took extremely aggressive chemotherapy of the original higher concentration of Folfirinox in use between 2011-2018 to be effective. Fortuitous was 55 and in excellent shape from a healthy lifestyle since my teenage years and long distance endurance cycling. This allowed me to endure 46 cycles of chemo administered every 15 days in groups of six cycles that alternated between Folfirinox and resting cycles of 5-FU/Leucovorin. It was dosed this way because of having to go well beyond standard of care treatment of 12 cycles and the concern for permanent damage as a result of chemo induced peripheral neuropathy . Cold therapy to protect peripheral nerves from oxaliplatin was not known in 2012 when I began chemotherapy.

So in retrospect, had there been no issue of involving vasculature, the preferential method of treatment would have been neoadjuvant therapy to address the high potential for micrometastatic disease which is a hallmark of pancreatic cancer occurring earlier than other types of cancer. This likely would have shortened the duration of standard of care chemo, although I still would have lobbied for going beyond 12 cycles as that is an arbitrary number that was selected by oncologists. It is no guarantee it will eliminate minimal residual disease that is the cause of recurrence in 80% of patients within 24 months of having the Whipple or distal pancreatectomy with splenectomy. Oncologists that have followed my case over the past 12.5 years credit the inordinate amounting Folfirinox I received as being a key component resulting in being determined cured.

One more thought, if I may... (Repeating my disclaimer that I have zero medical training)

The big tradeoff in the surgery/chemo first debate is how likely you are to get ALL the disease with surgery first; and if you don't, what condition will you be in after surgery with delayed start of the inevitable chemo.

Part of the rationale behind Total Neoadjuvant Therapy was that patients who could not tolerate chemo after surgery at least got a "full course" (arbitrary definition) of chemo as part of their treatment, improving the odds of being micro-metastasis free after surgery. (Of course the possibility of micro-/macro-metastasis while on neoadjuvant chemo is still there, so it's always a gamble.) You ( @mrajat ) being young and fit, stand a great chance of easy recovery and ability to tolerate adjuvant chemo after the surgery.

My personal thought is that 27mm x 24 mm is a pretty sizeable tumor, and the head of the pancreas is a pretty critical location in your digestive tract. IF cancer has spread anywhere else, you don't know where / how much because it's still too small to see.

My (non-medically trained) logic is that the primary tumor has billions/trillions more cells than whatever micro-metastasis has spread elsewhere; that makes it the largest possible contributor to (additional) metastasis and largest number of cells with potential to mutate.

If you start chemo first, and then later discover other mets that disqualify you from surgery, you're pretty much stuck for life with that tumor on the head of your pancreas. In my case (recurrence detected at remaining "head" of pancreas along with mets that disqualified me from surgery)... that tumor grew to block my stomach outlet and wreak havoc with the rest of my digestive tract. The visible met (actually only one visible) wasn't even detected until several weeks after the recurrence was confirmed, just as I was preparing to begin the chemo my surgeon wanted before doing a "re-Whipple" procedure.

I still have other tumors/carcinomatosis in numerous other parts of my abdomen, but they are all small and none are in critical locations. If we had gotten rid of my main tumor upon discovering it, my digestive blockage would not exist, and the remaining cancer in other areas would still be "manageable" albeit more advanced than would be the case if they had been treated earlier.

There are treatments and trials out there for what it considered "oligometastatic" disease (metastatic but limited to a small number of tumors and locations). These are bigger than micro-metastases because you obviously wouldn't be able to count them if you couldn't see them.

Long story short: IMHO, the biggest tumors in the most critical spots are likely to cause the biggest problems, and those are what I would address first.

I hope you will keep us posted regarding your final decision and eventual outcome. Good luck with it all!