Pre-Whipple CA 19.9 levels. What was yours?

Hello there,
I appreciate your efforts however everything not so dependent on just the CA19-9 levels; also depends on your mutations most of which you may not know until they get tissue samples following surgery. I had the distal surgery and my ca19-9 was 91 and I was stage 2 with 1 regional lymph node impacted.I had no chemo prior to surgery (my choice) and had surgery less than 1 month of being officially diagnosed. Best wishes in your journey!

Lots of "It depends on..." in there, but FWIW:

My level varied a bit in the 8 months between diagnosis, 6 months of Folfirinox, 4-week washout, and Whipple, as it was getting tested at multiple labs over that time. But at the hospital where I had my surgery, 4 months of pre-op data had it going from 118 to 166 just before surgery (and down to 12 the week after). I was basically considered Stage-2ish at the time. CA19 increase did not deter the surgeon, as MRI as week prior to surgery showed no new concerns.

Unfortunately, I had a recurrence 3.5 months after surgery, at the original surgical site, despite being declared a clean R0 resection and 22 clean lymph nodes.

Although there's a possibility new cancer took root in the remaining pancreas just after the surgery (always a chance of cells going rogue with a germline ATM mutation), the odds are more likely that 1) the intra-operative pathology simply missed malignant cells during analysis (that is apparently not uncommon), or 2) there were other malignant cells nearby but deeper into the remaining pancreas than the final cut, and thus never got examined.

Either way, it feels to me (non-medically trained, and in hindsight) that the pre-operative Folfirinox was a waste of time, and a total pancreatectomy would have solved the problem.

In your situation, those levels don't sound crazy high. I've heard from other patients here that their surgeon wanted to see the number come down to "under 1000" as a general goal before operating.

I think your surgeon is right to be concerned about the increase, but also seems very conservative delaying without evidence on imaging or otherwise that cancer has spread. My surgeon's procedure included doing one last MRI a week before the Whipple, and starting the surgery with a diagnostic laparoscopy to check for any signs of metastasis before cutting me the rest of the way open to finish the Whipple.

I think any more time you spend on chemo is just time for the cancer to spread -- take it out now, and deal with any consequences later. The consequence is that if you have a Whipple, you have to deal with all the issues of that (digestive, diabetic) and a window of 2-3 months where you can't begin adjuvant treatment while you're healing and adjusting. Cancer can grow and/or spread rapidly in that interval, but it's a gamble... If you show no mets in immediate pre-op imaging or diagnostic laparoscopy, it seems reasonable to proceed with Whipple (or total pancreatectomy).

If you go that route, don't let the recovery time go to waste. Make sure your surgeon saves tissue, and sends it out for genetic testing (Signatera, Tempus, etc). Get the most frequent follow-up imaging, CA19-9, and Signatera testing you can until you're ready to begin adjuvant chemo. (Even if all your margins and nodes are clean, CA19 and Signatera do not indicate cancer, I would not skip the adjuvant therapy. Disastrous in my case.) You want those baselines to better understand possible next steps.

During that healing time, seek out the center(s) where you'd like to get 2nd or 3rd opinions. Schedule the appointments -- you can always cancel them later, but they're hard to get, and take time. All your interim imaging and CA19/Signatera results will be at your fingertips and ready for a new doc if consulted.

Also, the genetic results from your tissue testing should be back before then, and you'll know if you have any somatic mutations in the tissue that didn't show up in pre-operative blood tests. These are often targetable, and you'll be able to search for clinical trials relevant to it before you actually need them.

There are lots of papers relating to CA19-9 and prognosis; I can't recall or find half of what I've read or watched, but I do have my "go-to" link of Dr. Katz from MD Anderson discussing neoadjuvant therapy vs de-novo surgery:

At the 8:12 mark he also discusses progression while on pre-operative chemo.

I hope this is helpful.

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Two random add-on thoughts:

1) You could ask whether administering HIPEC is feasible or appropriate after work on the pancreas is done (Whipple or total pancreatectomy). If there is no evidence of spread elsewhere, they would not have to do any of the other arduous CRS (cytoreductive surgery or debulking of other cancer) because they don't have any to remove.

But if they're so concerned by the CA19-9 about cancer that _might_ be there, and no systemic chemo for 2-3 months after the surgery (plus the one month before it), then a peritoneal/abdominal wash with chemo drugs while you're open gives you one chemo "treatment" during that interval that you wouldn't otherwise get. And, it might kill cells by direct contact that wouldn't have otherwise been hit with as concentrated a dose as they'd get during a traditional infusion.

2) I hope you can ask their opinion about total pancreatectomy vs Whipple. TP is discussed in this paper https://karger.com/dsu/article/33/4/335/117924/Is-It-Time-to-Expand-the-Role-of-Total more in the context of IPMNs, but with plenty of discussion about the potential for progression to cancer.

@markymark,
You write you have germline ATM mutation. Is that a deletion or substitution of base(s)? Mine is a substitution of base 40. My journey seems a bit similar to yours as my reoccurrence of cancer was diagnosed 4.5 months after post op chemo ended, although a growth of soft tissue was noted around the hepatic/celiac artery trunk in December (my surgery was in October and I started chemo in January or 1 month after I should have due to complications of a leaky duct). Radiologists thought soft tissue was scar tissue so after chemo ended it grew and spread to liver and abdominal peritoneum. I also have TP53, TSPC? mutation, GRAS12-D mutations, and maybe the Claudin 18.3 mutation. Does your research show that reoccurrence more likely if you have germline ATM mutation? is there a maintenance chemo pill then we should be taking following the typical post chemo treatment which I’m sorry your drs didn’t administer. I believe I have read about a couple of people who take an oral maintenance pill - capcitamine? Hopefully by sharing our stories the medical personnel can learn about different treatment options that are more appropriate.