How important is rising Ca19-9 if CT is stable re: having surgery?

I am not a medical professional of any sort, so please take my thoughts as ideas and opinions, not facts. FYI, I'm a stage 4 patient, diagnosed in late March, and I don't qualify for any type of surgery or radiation.

My oncologist has told me that CT scans cannot "see" flat lesions that are smaller than 1.5 cm. (I've also read 1.0 cm.) I don't know about PET scans, so it would be worth asking how good the PET scan resolution is. The CA 19-9 test is a weak diagnostic tool, although it seems like physicians routinely take the test as part of their initial evaluation. Anyway, putting those two ideas together, one question for the MD could be: Could the elevated CA 19-9 result mean there is cancer activity even though the PET scan can't "see" it? You could also inquire how thoroughly the surgeon looked during the laparscopy--maybe he missed something?--but you surely don't want to insult him, and he sounds like he's under pressure due to the timeline, so step carefully there.

Re chemo, I've never had Gemzar/Abraxane, only Folfirinox, so I can't compare them. I've had 16 rounds so far, 8 of modified Folfirinox (all but one at 60 percent of the typical full dose) and 8 of modified Folfiri (no oxaliplatin, and still at 60 percent of typical dose). My first round, which was at 80 percent of typical, was awful, but since then things have gotten much, much better and more predictable. I have chemo every other week and am usually "under the weather" for three or four days, but otherwise function pretty much as usual the rest of the time. For me, Folfirinox/Folfiri has been very effective, and we are planning to continue it as a maintenance treatment for as long as possible. I know that others on this board have found less success with Folfirinox, and I'm hoping they post as well.

I don’t see a reference to an MRI.
Ditto the remarks concerning CTs. Sometimes they will not pick up flat tumors although mine w/WO contrast did. However, there was a potential other one that during surgery could not be found. Surgery was October. My tumor marker starting rising from normal a few weeks after surgery . last week, it dropped by 50%. The scans showed nothing new but a small area of uptake. A liver MRI was then prescribed to look in detail. They still cannot find anything definitively. During that period I had surgical recovery, began GEMZAR and also had Covid. Even though I had very little downtime I believe the CA19-9 was affected by a combination of all of this.
Good surgeons want to operate if it is curative. Even for a period of time. If they believe, based on the data they have that they cannot remove all known disease, they don’t go in. As much as we want it out, we must realize that if it is in the bloodstream, removing a tumor will not cure. Perhaps the chemo decision is a good one to make your surgery more successful and allow you to be NED for a longer period of time or forever!! CT DNA may be the next test useful for you.
Lastly, these tests (19-9 and CT DNA) track my disease pretty accurately, This is not true for many. CA19-9 can be affected by many things and can bounce around. I believe it is the overall trend that doctors rely on. Not one number. Take care; I understand the anxiety surrounding all of this.

Well, there is a gap between last chemo and surgery of normally four weeks. (Ask about gap protocol - my WBC was terribly low). Looking back, I think my body needed longer to bounce back. Your concerns about Folfirinox are valid. I have heard (do not know) that it is a more difficult chemo than one you had bad reactions to. I had eight rounds of Folfirinox before whipple. Many oncologists wouldn’t recommend Folfirinox to you based on your Gem/Abraxane experience - ask about that very precisely. I am not a doctor but this is a tough call. I was not eligible for chemo after surgery due to wicked infection and slow wound healing. So, chemo after whipple is not guaranteed either. Some people do chemo before/whipple/chemo after. Some do no chemo ever. I don’t remember you saying what you are treating? Type of cancer, any mutations? My body doesn’t make CEA or CA19-9 so that was never part of my equation. The comments on scan limitations are unfortunately real. So even if scans look good for surgery - once surgery starts - surgeon may find differences. Laparoscopy was done on me prior to surgery to validate candidacy. There are many checkpoints before this major surgery. All worth asking about, along with age and overall health of patient. Don’t panic and ask the hard questions. May everything go in your favor.

Thank you for your feedback.
Like you, my diagnostic lap was negative.
I have adenocarcinoma, 1 cm tumor in the neck, moderately differentiated. Stage 1 at dx 9/23.
My concern with restarting chemo is that history will repeat itself. Even if it brings the Ca 19-9 level down, after stopping the chemo with the plan to go to surgery, what’s to stop the levels from rising again?
That is a question I’ll definitely be asking.

Thank you for sharing. What chemo were you on prior to surgery?
Is the CT DNA a biomarker/ liquid biopsy? Can this be done without having surgery?
How are you doing currently? Hopes and prayers for you🙏
Appreciate your feedback…

ctDNA (circulating tumor DNA) is sort of a liquid biopsy based on a simple blood sample. I had the Guardant 360 done before surgery. It found tumor DNA with my ATM mutation, but couldn't tell whether the mutation was inherited or spontaneous. (The Invitae hereditary/germline test had already identified it as inherited.)

My thoughts (having ZERO MEDICAL TRAINING!) are that surgery can __definitely__ remove the disease that is __definitely__ there, while chemo __might__ remove other disease that __might__ be there.

The high CA19-9 might be due to your primary (and so far, your ONLY) tumor, possibly elevated by all the other crap your body has been through. A liquid biopsy may indicate the presence of tumor DNA in your bloodstream, but that might also be due only to your primary tumor -- I don't know whether it means there are live tumor cells spreading in your bloodstream or not, and if there are, whether your own immune system can knock those out before they implant somewhere else.

If the previous CT and diagnostic lap and biopsy were negative and your 1/2 PET is negative, I don't know if it's worth requesting an MRI beforehand, but I would be leaning toward surgery asap after that, and worry about the mets later IF they ever occur.

Your surgeon would likely do one more eyeball inspection (laparoscopically) before doing anything major, so it's one last chance to confirm that resection is a reasonable choice.

Recovery is not easy, but as long as you're fit and your blood counts are good, and you are able to eat to maintain weight and strength after surgery, you should be OK. There might be alternatives (in addition to trials) after surgery if you're not able to tolerate traditional adjuvant chemo. Oral capecitabine + radiation might be one alternative, depending on what they find and where they find it.

You could also ask if there's anything else they can do during surgery to improve your odds, such as another peritoneal wash (questions about that later!) or brachytherapy -- implanting radioactive pellets or a Civa Sheet ( https://civatechoncology.com/civasheet/ ) around the margins or other areas of potential risk.

Hi there, my husband is also stage IV and in Folfirinox. After 4 rounds they did scans and showed cancer was “stable” so the plan is to stay on it every other week. He is really struggling though. Prior to chemo the pain was excruciating and that’s how he was diagnosed but been on crazy pain meds and struggles with GI issues. Would love for him to have more “normal” days. Any suggestions for managing pain, diet, fatigue or general side effects?

I'm so sorry your husband is dealing with all that! I am the wrong person to ask about GI problems and pain control, because right now I have neither issue. I would urge you to talk with your medical oncologist about possibly adjusting the dosage level of the Folfirinox. My first round was at 80 percent of typical level, and it was awful; I was really sick--nausea, vomiting, diarrhea, weight loss, etc. For round 2 and beyond, the dosage was reduced to 60 percent, and chemo has gotten much easier, as I mentioned above. Also, does your husband have a palliative MD? At my clinic, patients are referred to palliative immediately upon diagnosis/staging, and the palliative doc handles symptom control. However your clinic does it, I hope you all can figure out some solutions to help him.

Thank you for responding. Yes, we are working with palliative care and they have been very helpful. It does seem a little trial and error to see what works so I like to check in with people who may have similar experiences.

First, let me wish you a Happy New Year filled with total recovery and no worries.
My story was different, but I also had rising CA 19 9 levels without concrete evidence of recurrence. After having surgery 2 years ago..also Jan 12, I was cancer free. Then I had 6 months of gemcitabine and abraxane for another 6 months. I was cancer free for 20 months. CA 19 9 had started to rise, and CT scan showed an "area" of concern with several lymph nodes. Had a follow up MRI, which did not show that area and showed lymph nodes had shrunken. Was scheduled for an EUS...endoscopic ultrasound..which found no lymph nodes and no area of concern. At that point my CA 19 9 was over 400. The physician told me my pancreas looked healthy. 8 weeks later I had another CT, which showed lymph nodes and a mass on my pancreas that was about 2 inches x 1 inch. I was then put on 5FU..a modified version of Folfirinox. I am on a reduced dosage, and also have opted not to take oxaliplatin. Just to go back a bit, prior to the gemcidibine and abraxane , I was given Folfirinox and reacted terribly to it. My oncologist at the time never told me they could adjust the dose.
I had almost immediate vomiting and a fever. So, they put me on the gemcidibine combo.
With the recent "recurrence" 3 months ago, I am now on 5FU. Have had 7 infusions.
Lymph nodes have reduced and CA 19 9 has fallen by more than half.
So, the question about folfirinox being worse...yes, I find it worse than gemcitabine and abraxane. But, I havent really lost much hair on it. The nausea from it is much worse than Gemcitabine combo, and i may be sick for 5 days. Also experiencing muscle and joint pain and back pain. Fatique is not too bad.
So, it's all confusing. I am so grateful that numbers have fallen and lymph nodes have shrunken. After next infusion, I have a new CT scan and we'll see what has shrunken even more.
Keep visualizing being healthy and strong and in complete remission with no evidence of disease.! I'm sorry that this may not be very helpful to you, but I hope it gives you some peace and reassurance to know that we are surviving and are very capable of thriving.
Best wishes to you. I'll be thinking of you.