What are the symptoms to look for for pancreatic recurrence?

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.

markymarkfl - May I ask what your CA19.9 level was immediately before your Whipple? I'm scheduled for a laparoscopic, modified Whipple on January 25. However, my last CA19.9 result had risen to 153 near the end of my radiation treatments in early December. (A month earlier I had a low of 43 following a high of about 650 in June.) Do you (or anyone else) know at what level CA19.9 would be before postponing surgery? I presume any postponement due to high and/or rising CA19.9 levels would require additional neo-adjuvant chemotherapy before rescheduling surgery. Thanks.

@wjk , I was tracking my CA19-9 at 3 different labs (for weird reasons), but was in the neighborhood of 200 one month before Whipple, and 12 one month after Whipple.

The pre-Whipple trend was inching slowly upward, which means the Folfirinox might have been keeping things from "getting worse faster" but not really doing anything to lower it. The surgeon basically wanted to see some level of pre-operative control before operating. Not sure why, but since my recurrence and CA19-9 near 700 at the beginning of treatment, I've responded way better to Gem+Abrax+Cisplatin than I did to Folfirinox -- found it easier on my system too.

[As an aside, that's one of my frustrations about some of the "stay the course and observe" styles of treatment -- they can waste time before determining that a different treatment might be more effective.]

In your case, I don't know if a jump from 43 to 153 is too significant or what the cause might be if it's real, or if that would impact the surgeon's plan. I certainly hope not! One big question would be whether the CA19-9 is being shed from cells in the original tumor or from cells that started floating around elsewhere.

One thing the surgeons typically do when they open you up is start with an exploratory laparoscopy -- just looking around with a camera for signs of spread that may not have been detected on imaging. That's often the point where they might abort, rather than just depending on CA19-9 and/or imaging. (My last MRI was one week before Whipple, so the info was very current, but the surgeon still performed the laparoscopic inspection before my full open Whipple.)

Since you're off treatment for around 6 weeks before surgery, and probably will be off for 6 weeks after, there is a definite risk, as we know with this beast. I don't hear about many surgeons being willing to step outside of the box, but if I could direct my own treatment, I would ask about a few add-ons:

1) Could a systemic treatment like immunotherapy, PARP inhibitor, etc... be used in the interim without messing up blood counts before surgery or impeding healing after surgery?

2) Could a "physically regional" therapy like Tumor Treatment Fields be used in the interim attempt to help control the spread (without any side effects)?

3) Could they do an open Whipple instead of laparascopic, and add the HIPEC therapy during the operation? If there's any microscopic spread they don't see in the peritoneal area or at the surgical margin, doing the heated chemo wash might help kill those cells. It would basically be "one free chemo treatment" (not systemic, but more regional than surgery) in the middle of your otherwise 3-month hiatus from treatment.

4) If they see any problem with surgical resection of the pancreas, could they switch modes to something like IRE (Irreversible Electroporation) while they're in there.

Those seem like feasible (to me, non-medically trained!) backup plans to get the most bang for the buck while you're under anesthesia and having insurance pay for what might be your one big shot.

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.

markymarkfl - Thanks so much for your helpful reply. FYI, I will have PET scan, CT scan, and blood draws two days prior to surgery, as well as the appointments with radiation oncologist, surgeon, and oncologist the day before surgery. I'll be exploring the add-on possibilities you mention and be posing a few questions to my physicians in the coming weeks. To date, all signs of chemotherapy and radiotherapy have been very good, excepting the late bump in CA19.9 levels.

Side note on 15 radiation treatments over the course of 3 weeks (with weekly low dose Gemcitabine infusions), in case my experience helps anyone. I was warned the side effects of treatment would accumulate and worsen until 1-2 weeks following the last treatment. The first two weeks of treatment had remarkably little side effects on me. However, that changed in the last week of radiation and the nearly two weeks that have followed. Most side effects have now faded 12 days after my last radiation treatment. Unlike the cake walk of the first 2 weeks, the nearly 2 weeks that followed have not been fun. Intermittent, severe abdominal pain, extreme fatigue, loss of appetite, weight loss of 7-8 pounds, erratic sleep habits, various GI issues, and some loss of mental acuity. My advice..... be prepared. I'm feeling much better the past couple of days with nearly all side effects much diminished or gone. (Merry Christmas to my supportive family and me.)

Happy holidays to you markymarkfl and yours. Thanks again for your helpful input.

And season's greetings to everyone who reads and participates in this ever helpful group as we collectively make our individual ways along the path of pancreatic cancer during this holiday season.

Hello,
I find that there's a somewhat fine line between trying to feel cancer free, yet being diligent about reoccurrence. You are smart to be thinking about it. I had the distal surgery with only 1 regional lymph node impacted. I then had 5FU for 6 months (12 sessions), and came out they thought with clear margins and a low CA19-9 of 6. My subsequent CT scans were clear with the exception of hepatic/celiac artery area which drs said was scar tissue. My chemo ended in June of this year. I was feeling great, and then in early November of this year during my routine bloodwork my CA19-9 showed my antigen was rising (from 6 to 23); though still under the upper limit of normal or 37. Though I was concerned, it was the guidance from markymarkfl and jk77 and encouraged me to look further into the matter. My oncologist's office felt I was just over-reacting, so I got my primary care dr to order more CA19-9 tests for me and within a few weeks I was at 223. My primary followed through with my complaints about oncologist and contacted her. She ordered a Signatera blood test. Just found out it showed nothing. I followed suit with markymarkfl who said a MRI found his area of reoccurrence since he had the ATM mutation. My pathology (you should know yours), said I didn't have the mutation per se, but it seems a switched base of "unknown significance" which I interpret as not enough research evidence out there yet to say its the pure ATM mutation. However, my father had pancreatic cancer and my paternal grandmother had breast cancer at a young age, so I say it's an inherited mutation. Anyways, the MRI showed a lesion in my liver, and the subsequent endoscopy showed a few lesions in my liver. Mine reoccurrence seemed to come back quicker than most. My father had a very aggressive pancreatic cancer and only lasted a few months; so I'm thinking mine will behave similarly; however, he was too far along to receive any treatment and he had cancer in almost every organ after finally being diagnosed with pancreatic cancer. It's interesting to me that though I have a family history of it, in my opinion, no dr has ever tried to explore the correlation between the 2; had they I think due to the aggressive nature of my pancreatic nature, they would have extended my chemo or had put me on an oral chemo as my surgeon had thought I should. I will be starting the gemzar (right spelling?) this week to be followed by radiation. Your case could almost certainly be different, I believe the characteristics are based on the actual mutation (not just ATM, but the particular protein or base involved), and most likely lifestyle. In conclusion, be diligent and get tested regularly for the CA19-9, but somehow enjoy the life you have now and live it to the fullest!

I was diagnosed stage 3 pancreatic cancer in September 2018. Whipple surgery removed the tumor on the tail of my pancreas. 11 rounds of chemo followed (couldn't complete the 12 they wanted). But here I am over 5 years later. My surgeon just said watch for weight loss and jaundice for reoccurrence. It was weight loss and jaundice in my eyes that made doctors suspicious in the beginning. Wishing you good luck with your health. Keep positive and good things will happen.

Congrats. I’m always excited to hear positive stories. I will certainly be looking for those 2 symptoms. Wishing you continued great health.

CT scans only can see so much. My PET scan showed the recurrence of cancer in other areas of my abdomen. In chemo and CA19-9 has dropped to 80 from about 500. Another PETscan will be scheduled …..I am hopeful….