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Pseudo cyst / CA 19-9 trending up
I’m 7 months from a successful surgery. Half pancreas and spleen removed. No lymph node involvement. I have a pseudo cyst of fluid from the surgery. Dr doesn’t seem to be concerned and will give it a year to subside. In the mean time, my CA 19-9 has trended upward. 38 at the highest before surgery, 16 after, and now 250. NED after CT scan. I feel as though I should be doing something to keep the numbers low. Should I start with having fluid drained?
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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
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2 ReactionsI 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?)
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3 ReactionsThank you, meeting with oncologist end of the week. Will definitely ask these questions
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1 ReactionHave 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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2 ReactionsMRI tomorrow.
MRI showed cancer has metastasized to liver and abdomen! Now stage 4! After surgery in April I was stage 1 with no lymph node involvement. Be sure to watch you CA - 19 markers! Mine were rising, but CT scans were clear. Just because they can’t see it, doesn’t mean it isn’t there! Waiting on biopsy of liver to see if I’m a candidate for immunotherapy. I will refuse palliative chemo unless it is at an integrative cancer care place. Anyone have suggestions?
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2 ReactionsGolly, I'm sorry to hear that. You are absolutely right: CT scans cannot see small lesions. (I was told anything less than 1.5 cm, but I've also seen 1 cm mentioned online.) What is your CA 19-9 now? Also, I wondered what you meant about doing palliative chemo only at an integrative cancer care place. Which locations are you looking at? Anyway, mostly, I wanted to say that you may not yet be out of luck. Yes, you're stage 4, but there is still much that can be done to bring the cancer under control. Best wishes to you!
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1 ReactionThank you. I’m having a biopsy of liver spot to see if I’m a candidate for immunotherapy. Haven’t had a CA 19 test since my last one which was 250 less than 2 weeks ago
Which drug(s) would you be taking on immunotherapy? My MD hasn't mentioned that as an option down the road, so I'm curious to know what's been mentioned for you.
She hasn’t yet. I asked her if I could it after surgery, and she said I wasn’t a candidate. Not sure what has changed? But they want to test tissues from liver Mets and my saved pancreas tumor. Think it is a shot in the dark.