Recent diagnosis: Have questions about treatment options?

Thanks for sharing and sorry to hear about your sister's metastasis.
I thought the chemo regimen is the same once they have advised the formula. Do you think there is benefit in getting it adminstered at MSK instead of my local (Chester County hospital)?

That's helpful. Thanks for sharing!
Could they still have tested the genetic mutation if the biopsy came back inconclusive?
My surgeon at MSK said he has done 2,000 whipple procedures during his 20-year career--so about 100 a year.
Sorry to hear your surgery had some complications, but glad you are doing Ok now 2 years in. Good luck!

Thanks for sharing, Marie! That is uplifting to hear 🙂

Thanks for sharing and that's great to hear you are doing well now. How long back was your surgery?

Thanks! I'm in Philly area. Do you think Johns Hopkins would be a good tiebreaker or would you recommend Mayo only?
Can they test for mutations despite the biopsy coming back inconclusive?

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.

“Do you think there is benefit in getting it adminstered at MSK instead of my local (Chester County hospital)?”

I think Mayo - Rochester chemo floor is staffed with ~ 30-35 very experienced and highly trained RNs with other experienced professionals close by.
At Chemo #2 my wife had a bad reaction to one of the Chemo drugs, it was very scary for her she could not breathe.
The RN helping her pushed the alarm button and we had ~ 8+ RNs treating my wife in no time, all calm and all doing something to help her, all working together, it was comforting and impressive to watch.
You only know if you need a lot of experienced help at the instant you need it. I’m glad we had ~ 35 experienced RNs that instantly came running.
Chemo #2 was paused for 90 minutes and then restarted with no further issues.
Premeds were adjusted and she’s had no excitement during treatments since.
Many RNs with 20-35+ years of experience and extensive training helped us.
YMMV

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!

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.