Recent diagnosis: Have questions about treatment options?

Hello @mrajat and welcome to Mayo Connect. I am glad that you found Mayo Connect. This is a forum where others can share their experiences with you. We have a number of members who have been diagnosed with pancreatic cancer and as you meet them on this forum, you will undoubtedly learn a lot.

First of all, you are asking good questions and seeking information. This is a great way to start on this journey. I would like to invite other members of this group to share with you, including @gamaryanne, @mnewland99, @rjm1942 @markymarkfl, and @stageivsurvivor. You will meet others as you post in the Pancreatic support group on Mayo Connect.

I would also like to share with you a few Spotlights where I interviewed members of Connect who have shared their experiences with pancreatic cancer. Here are links to some of those.
--@stageivsurvivor
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/clinical-researcher-turns-patient-advocate-meet-stageivsurvivor/
--@markymarkfl
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/facing-it-with-connect-meetmarkymarkfl/
and
@mnewland99
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/rockin-down-the-pacific-coast-highway-meet-mnewland99/
How are you feeling now? Have you had much weight loss?

mrajat,
Sorry you have to deal with this, such a difficult and conflicting choice for you.
I know nothing about what’s best for you. My wife is currently being treated at Mayo - Rochester for a biopsy confirmed - PDAC that is thought to be BR. She has currently done 10 of 12 neoadjuvant mFOLFIRINOX so far, 11th is scheduled 12/6/24.
Your mention that “The biopsy results came back inconclusive.” is what I noticed.
Have you considered another opinion? To break the tie or give you some other perspective? Can you get a third opinion inside the 3 week surgery window?
Arguments can be made to treat a confirmed cancer diagnosis either way, I can see benefits to both.
You’re young and healthy and have caught whatever you have at what appears to be an early stage which is encouraging.
God bless and good luck.

I'm not a doctor, but I'm voting on surgery first at MSKCC as long as you are committed to doing adjuvant chemo (and radiation if recommended) afterward.

There are a lot of nuances to consider, but in a nutshell, I look at it this way: Surgical removal is the only reliable cure for pancreatic cancer, but the catch is that you have to remove 100% of it, or remove enough that chemotherapy has a chance to kill the rest. However, chemo rarely kills 100% of whatever cancer remains in your body, even if it's at undetectable microscopic levels.

I vote for treating the cancer you KNOW exists first with a method that you KNOW "cures" it it over treating cancer that MIGHT be there (elsewhere) with a method (chemo) that MIGHT cure it.

There's a definite chance your cancer could spread while you're doing chemo before surgery. Surgeons want you off chemo (another chance for cancer to spread) for 4 weeks before surgery, and this is already longer than the 3 weeks your MSKCC surgeon has you scheduled to wait. After surgery, you may have to wait 4-8 weeks to heal before starting chemo, which is still another chance for anything that remains to spread.

You also mentioned the inconclusive biopsy. That means they don't know specifically what type of cancer it is (if any) and thus don't know what the most appropriate chemo regimen for it would be.

You are young, fit, and going to a reputable center of excellence, so that odds are that you will survive the surgery just fine and recover well enough soon enough to tolerate and benefit from adjuvant chemo.

Your relatively low CA19-9 level is a good indicator the cancer is not yet advanced. It may be of limited benefit, but you could consider requesting a PET scan prior to your surgery. On the plus side, it might reveal any disqualifying metastases, possibly give the surgeon new anatomical insights, and maybe resolve some of the ambiguity from your biopsy. A potential negative is that any remaining inflammation from your biopsy might register false positive uptake on the PET.

For background education, I always recommend these two 10-minute videos debating the subject of chemo first or surgery first:

Context for my comments:

I was also healthy (casual triathlete) and fairly young (58) at diagnosis of stage-2 PDAC in the pancreas head. My team (at a center of excellence) recommended TNT ("Total Neoadjuvant Therapy) which consisted of 6 months (12 bi-weekly infusions of Folfirinox) before Whipple, and no therapy afterward. Cancer returned in the original surgical bed less than 4 months after Whipple, and had turned into Stage-4 before I was able to begin treatment. I was not happy or impressed with this approach.

The six months of pre-op chemo did nothing for the size of my tumor or my CA19-9, and seems to have been a waste of time. I'm just a sample of one, but that's my experience and rationale for my comments.

Wishing you all the best.

Some other random thoughts:

1) In the time you have between now and surgery (or chemo if you go that route), try to get all the relevant genetic tests possible done: at least a germline test like Invitae to determine any inherited mutations you may have.

2) It might not hurt to get a somatic blood test like Guardant 360 for genetic mutations of cancer cells floating around in your blood.

3) If you go with surgery first, ask your surgeon ASAP (because this stuff takes time to resolve) his/her process for saving tumor tissue and having some of it stored locally or sent out for NGS (Next-generation Sequencing).
a) NGS options include tests from companies like Tempus
b) "Live-state" tumor storage from companies like https://storemytumor.com/
c) Sensitivity testing from a company like https://www.travera.com/
d) ctDNA tests like Signatera for MRD (Microscopic Residual Disease); useful for ongoing assessment of treatment effectiveness or (supporting) indication of recurrence.

Travera had a free clinical trial going on last summer for testing pancreatic tissue. Since you may not know before surgery or before adjuvant chemo begins which drugs are most effective on your cancer, using the recovery time after surgery to get sensitivity tests done might help your docs start you on the best chemo first.

(e.g., even though Folfirinox is the regimen of choice for young, fit patients like you, it might not be the best. In my case, Gemcitabine + Abraxane + Cisplatin after the recurrence turned out to be way more effective. Had we switched to that part way through my neoadjuvant treatment, my outcome might have been very different.)

Regarding adjuvant therapy: If you go straight to surgery without any prior (neoadjuvant) chemo, after surgery you will still be a "chemo virgin" ("treatment naive" is the medical term, iirc). This might qualify you for certain clinical trials, including "vaccine" trials that you might not otherwise be eligible for. MSKCC always has a ton of trials going on, but every trial is time-consuming and tricky to get into. Ask about those options at your first opportunity.

Try to get at least one more CA19-9 test as a baseline before you begin treatment (surgery or chemo). Get the tests again after surgery as well, ideally at biweekly intervals. You might see inflated numbers shortly after surgery (due to inflammation, etc), but you should eventually see a downward trend, and eventually (ideally) numbers in the low/normal range. Don't stop there -- that should be your new, post-op baseline, which serves as the reference for successive tests to see if you ever start trending upward.

I to had an inconclusive biopsy. Oncologist ordered another one and it came back positive. I was told at Mayo that what the cyst contained wasn't all cancerous thus the negative 1st test. I definitely would seek another opinion especially if there is vascular involvement. At the Mayo Clinic their treatment was chemo first, radiation second then surgery. Best of Luck.

I'm so sorry you're going through this. I know what a shock this is. My husband was in a similar situation - 58 years old, healthy, fit, non smoker etc. His mass was found by CT scan at our local hospital and we met with a local surgeon who explained what a distal pancreatectomy was. He acknowledged that we would most likely get a second opinion, which we did. We're in close proximity to UPENN and MSK but we went to MSK. We mentioned that my husband was on a wait-list for an endoscopic ultrasound for more info. The surgeon explained that there was something there that didn't belong there, it was most likely PDAC and she wanted to get it out immediately. She told us that we needed to move very quickly so between the date of finding out there was something there to having surgery, the timeframe was only one month. She didn't want to do chemo beforehand, she wanted to get it out and then do chemo after. That worked well for him. We have a friend who did chemo first, and her recovery was difficult because she was so weakened by chemo then even more so by the surgery. We've learned so much from this site and from all of the people here who have shared their experiences. My husband's recovery from surgery went well and he completed his 6 months of Folfirinox in February. He's now in the monitoring phase with scans every 4 months. I wish you all the best.

MSK is a Centre of Excellence for pancreatic cancer. 3 weeks out is fast for surgery. Eat lots of protein beforehand to aid in recovery, and walk walk walk as soon as you can after surgery, you'll do fine. Also ask your surgeon if they can do a modified Whipple, wherein they leave your stomach intact. I had that February 2024, followed by 12 rounds of Folfirinox. Unfortunately my cancer quickly metastasized to my liver and the soft tissue in my belly when I came off the Folfirinox, found by CT scan, but now I'm on Gemcitabene/Abraxane and it's shrinking my tumors and bringing my CA19-9 down quickly. Don't pay attention to survival statistics, you are young and healthy and that puts you in a very good position - and everyone is different. Best of luck!

Today most surgeons today use chemo first. Best surgeon is in Wi Dr Doug Evens at
Froedtert Hospital

This sounds so similar to me--but I'm an 84 year old woman, but like you, very healthy--no medications except for glaucoma. I was sick as a dog with the chemo--never have recovered my weight (almost 2 years--120 pounds to 95). It was the chemo with the FlorETC--I'm not as good with the medical terms as some, but the pump at home 2 nights; had to quit after 2 sessions and went for the Whipple. Like you, my antigen was 153.
THIS IS AN OPTIMISTIC NOTE TO YOU. I never went back to chemo, though strongly encouraged to. One year after surgery I had radiation for a mesenteric mass--now it has decreased as the radiologist said it would. I have been feeling great for over a year and have decided to only do radiation, which had minimal side effects if any. I have read several other positive results from radiation--PLEASE LOOK INTO RADIATION, the new type that targets. I only knew about it as my 85 year old husband had it for prostate cancer, sailed through it for one month driving himself 50 miles for treatment. I was impressed--no return of his cancer, but ongoing tests of course. I kept asking my oncologist about it, but on my own saw the radiologist who did not promise anything--did not want to compete was my impression. But I have read in this group that others have had good results with minimal life style impact.
I like what "marky..." has written you. I say the Whipple first; you will have new information then about lymph nodes, etc. so you can make a better decision about chemo. And look into radiation; not always recommended by oncologists (mine didn't) as they legitimately want to cure and wipe out every bit of cancer EVER. My radiologist did not promise that, but frankly I'm reading many who have recurring cancers after chemo too.
It has been 2 years since my diagnosis and I am having a normal life, feeling good, impressing my friends who thought I would be a goner. But 2 years as an 84 year old with no small children is way different from you--I'm thrilled for these years. I understand you have a life ahead of you--just look into radiation and immunology too. I think they are the future of cancer treatments. Best wishes...you have a good attitude and are facing the problem. You will make it and be there for your family.

As you can see, lots of opinions, but none of us are medical professionals. And, as you now know, not even doctors are of the same mind on approach.

My sister approached neoadjuvant with Mayo. The tumor responded somewhat, and the approach took six months plus another two months of radiation plus a gap following radiation prior to the scheduled surgery.

The cancer metastasized prior to the surgery date, she presented with ascites; surgery was not attempted.

If, given this knowledge in advance, we certainly would have had the tumor resected immediately. But, there are subtleties, like exactly where the tumor is located.

If a very qualified pancreatic surgeon at MSKK believes immediate surgery is possible and warranted - I would consider that. It might be something lesser than full blown PDAC, and might be very isolated from arteries. You are young and strong - in your favor. If chemo is needed, consider moving locally to the MSKK oncology - it too is better than your local facilities.