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CA19-9 Test: How often to test?

Pancreatic Cancer | Last Active: Nov 23, 2023 | Replies (7)

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@markymarkfl

How long ago was the surgery, how long was your adjuvant chemo, how often will you be getting scans and ctDNA tests, and what have your CA19-9 levels been since surgery and since adjuvant chemo ended?

Were you declared "NED" based on surgical results + imaging + CA19-9 + Natera?

I'M NOT A MEDICAL PROFESSIONAL, but I guess it depends on how well you know what your typical CA19-9 values are, and how stable the doctors consider you to be. However, being only 1.5 years out from the end of your chemo, I would consider 4 months a bit too long for comfort as well. A LOT can happen in 4 months, and the slowly rising CA19-9 actually signaled the beginning of my post-Whipple recurrence before imaging or Signatera ctDNA tests did.

(I went from NED for 3 months after a "perfect" Whipple to recurrence spotted on MRI at the 4.5 month post-op mark, with EUS/biopsy and 2 Signateras being negative, before another Signatera barely registered positive 7 weeks later and MRI confirmed mets along with the primary tumor growing. So, basically 6 months from Whipple to Stage-4. CA19-9 in that interval went from 12 to 33 to 77 to 277, and then 678 in 6 more weeks before I resumed chemo.)

Now on biweekly chemo for the recurrence, I get CA19-9 tested every two weeks along with CBC/CMP and the others necessary for another round. My last (local) oncologist would only test every 4 weeks while I was on my bi-weekly pre-op chemo. I was a bit frustrated by that, and got my primary care doc to write me an order for repeat/serial testing that I could take to a walk-in lab myself and self-pay ($25). Cheap enough for the peace of mind... So I was getting tested every two weeks, but at different labs. Their scales were different so the results were not directly comparable, but by keeping them separate for analysis, I had a better picture of the upward trend from both labs telling me the pre-op Folfirinox wasn't really doing much.

If you're starting with a new oncologist and a new lab, I (personally) would try to get tested every month to understand your normal values and trend, and then see how your new doctor's results match up.

But to be honest, if you've already had PDAC, I would be looking for another specialist closer to home. This one doesn't sound very aggressive, and I would worry as much about his/her response time as much as detection time.

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Replies to "How long ago was the surgery, how long was your adjuvant chemo, how often will you..."

Thank you for your thoughts about this and letting me know your testing schedule. I think a monthly test is still warranted, at least through my next scan in March -- in case the date needs to be moved up.

First, I am continuing with the cancer center that did the surgery and chemo on the mainland for scans and ctDNA tests for recurrence monitoring and expertise. The problem is, they can't order blood tests or any medication (should I need it) in my state (Hawaii), so I also need a local oncologist. There are no Pancreatic specialists locally available. There are many good oncologists for other cancers, but PDAC is rare here as far as cancers are concerned.

Second, I am 18 months from my last chemo and have been NED on all my scans except for a small spot on my liver they have been watching. My CA19-9 has ranged from 7-8, with a high of 20 prior to surgery (stage 1, nodes were clear). My first three ctDNA results were negative. I still have my port as they preferred I keep it in. My next scan is in March 2024. That will be my 2-year scan from my last chemo. I'm 77 and that's part of why they are cautious.

Recurrence is a concern, as you know. To hear a staff member from the local doctor say that I should let them know if I have any symptoms is a "red flag". Sure would be nice if there was an "early warning" system for this cancer! I think four months is too long for someone so close to surgery/treatment (regardless of initial tumor stage), but have no idea how other patients are monitoring their situations and if there is some sort of standard the major cancer centers tend to follow in terms of monitoring. If the consensus is more frequent testing, then I may be able to get some help getting more frequent tests.