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Pseudo cyst / CA 19-9 trending up
Pancreatic Cancer | Last Active: Dec 2, 2023 | Replies (10)Comment receiving replies
Pls take everything I'm about to write with a grain of salt, bc I'm one of the least knowledgeable members of this group. That said, I've absorbed some info from posts by those who *are* knowledgeable, so I'll share what I can, and others will chime in later.
An earlier thread, about a different topic, also addresses rising CA19-9, so it might be of use or of interest / of use. (My understanding is that CA19-9 can rise for other reasons, but I think that all of us with pancan are naturally alarmed when we see it rise -- and we want some definitive info ASAP.)
https://connect.mayoclinic.org/discussion/ca19-9-going-up-and-back-pain-at-night-recurrence/
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To guide other members who want to help, could you provide a little more info?
?? How many CT scans have you had since your surgery, and at roughly what intervals?
?? How many CA19-9 tests since the surgery, and at roughly what intervals? And, the trend upward has occurred across how many weeks or months / across how many of those tests?
?? How does your doctor plan to monitor you during this "let's wait" year -- with which tests / scans, and how often?
?? Are you being treated at a highly regarded center, such as one of those noted on the two links below? If not, can you get to one, in case you decide that you're not happy with your onc.'s approach and you want a second opinion?
https://pancan.org/research/precision-promise/locations/
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This link is from member stageivsurvivor: NATIONAL COMPREHENSIVE CANCER NETWORK MEMBERS
https://www.nccn.org/home/member-institutions
Replies to "Pls take everything I'm about to write with a grain of salt, bc I'm one of..."
Have CT scans and blood work every 3 months. First in August and CA 19-9 was 16. Second in November and CA was 149. Waited 2 weeks for another blood test and it was 250. Had what we thought was a classic gallbladder attack, right before second scan. Scan showed NED, ultrasound of gallbladder showed no stones.
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I totally agree. With a history of cancer and low CA19-9 readings, I would encourage you to ask your medical exactly team WHY it's 250 now, which would also answer the question of how to lower it.
If it's entirely due to the pseudo cyst and the fluid associated with it, that would be ideal, but new tissue can turn malignant in a "defective" pancreas like that, so I hope they don't go an entire year before checking it again.
Definitely keep monitoring CA19-9, frequently (at least monthly) and imaging as often as practical. Maybe an EUS biopsy if CA19 trend continues upward.
If they saved tissue from the initial surgery, they should be able to create a Signatera blood test for circulating tumor DNA, and re-run that periodically to monitor for evidence of microscopic residual disease. If not, and you want to gamble with $1000 of your own, you could also try the Gallery test from Grail. No guarantees either test won't return a false negative, but if either one returns a positive, your oncology team has a lot more to work with.
Is it "major surgery" to insert a drain? Seems like if they go far enough to insert one, then a) Maybe they could analyze the fluid for cancerous cells; and b) also biopsy some tissue from the cyst itself. (Laparoscopic biopsy instead of EUS?)