I know that CA19-9 is a tricky screening test with no established cut off to suggest invasive testing for CCA in PSC. My partner (PSC and UC) has had his checked twice. One year ago it was 22 and now it is 48. I suspect that the elevation is related to increased inflammation in his liver following a total colectomy about a month ago (he developed a small clot in the portal vein after surgery), but I am always worried about bile duct cancer. His last three MRCPs have been stable, though he does have a possible dominant stricture (present since diagnosis over a year ago) in his left hepatic duct that his hepatologist doesn’t seem too worried about given his overall clinical presentation. His ALP is normal (though much increased from baseline after surgery) and he is largely asymptomatic.
He is followed at a major transplant centre but they are less aggressive about doing ERCPs to investigate for cancer at our centre than at the Mayo clinic for instance. I’m wondering what other people’s PSC doctors have said about CA19-9 levels? Has anyone had a doctor recommend ERCP based on a certain CA19-9 level? If it were me I would have already asked for an ERCP with brushings just based on the stricture (because of my anxiety!) but my partner understandably prefers to avoid invasive tests at all costs.
Seagull, anything under a 34 is considered “normal”. I got worried when my CA-19 level went from a 21 to 29 within one test.
You’re right to be concerned. CCA is usually found late, and that limits some options. While I understand the fewer surgeries the better, this is one time to start fussing at your SO and his docs.
Thanks so much for your reply. Did you get investigated further with ERCP and FiSH? I am definitely going to follow up and at minimum ask to have the level repeated within a few months. I’m a bit less worried since there is a pretty clear reason for the recent increase but definitely will not ignore it. I don’t find the established cut off to be as useful as it was initially identified to screen for pancreatic cancer compared to healthy controls and is harder to interpret in patients with biliary disease.
Katie
Thanks! Hoping that my partner’s numbers will decrease too. Living with this uncertainty is the hardest part! Can’t wait until there is a better screening test for CCA.
Katie
Thanks Andreas, that is reassuring! I have heard the 100 cut off as well. Ultimately since there are no clear guidelines I think that screening for CCA is a complex and multi-faceted clinical decision making process that has to be individualized to each patient.
In my partner’s case I think that the increase is due to having a recent major abdominal surgery and the associated stress on his liver (he also developed a blood clot in his portal vein). However, if it remains elevated above his baseline or continues to go up I will push harder for an ERCP. I wish that our centre did regular screening for biliary dysplasia via ERC, but I understand there are pros and cons to that approach.
Be a aware though that ERCP is a very invasive procedure and there are big risks of getting serious infections after it. Therefor I wouldn’t recommend doing an ERCP unless his CA 19-9 is at least 100. One of the causes of having a slightly elevated CA 19-9 actually is having PSC!
Andreas,
I want to take issue with your statement regarding ERCP. I don’t want to give Seagull the impression that ERCP’s are so dangerous and risky that she should not have one. ERCP’s are a much needed tool in maintaining quality of life issues in PSC patients. My recommendation to any patient needing one is to make sure the doctor performing the procedure works with a transplant hospital, that he does this same procedure day in and day out, never let a resident or otherwise new inexperienced doctor perform the procedure on you. I had an doctor specializing in advanced endoscopy and never once had an episode of pancreatitis or otherwise infection.
If your bilirubin is increasing, and you are having more and more RUQ pain that runs around to the right lower back, etc. then that’s a good sign you have a blockage that needs clearing up by ERCP. Usually when they did my ERCP’s they went ahead and took brushings to send off for testing to see if cancer was present.
Yes, use caution, but if you need one by all means go for it, just take the precautions outlined in my post. I do appreciate Andreas your desire to advise her not to get the procedure unnecessarily, but elevated CA 19-9’s are not the only reason that one needs to have it done. Take care!
Thanks for the detailed information Mark! I do anticipate that my partner will need an ERCP at some point. I actually have been pushing for one since diagnosis because he has a possible dominant stricture that I would like to have investigated further for dysplasia or cancer. I bring it up at every appointment! We are very fortunate in that I am a physician (albeit in a completely different specialty) and he is followed at the hospital I work which is a major transplant centre. Apparently there is now an ERCP expert working here so I am hopeful that he will be in good hands. I had heard the same thing you mentioned that having an expert performing ERCP reduces the risk of pancreatitis.
Many things could cause fluctuation of CA 19-9 level, including the test machine and lab technician. It’s not a very specific marker anyway. Since they can’t find anything on MRCP, there is nothing more can be done anyway. Just check it periodically. And as other people said already, that CA 19-9 level is not high.
Thanks very much! I think I am just paranoid about any possible sign of CCA because my partner already had colon dysplasia and has a possible dominant stricture (has been there since diagnosis 1.5 years ago). I just wish I understood what exactly they are looking at in terms of changes on MRCP aside from the stricture that is already there. His doctor said that since his liver enzymes are normal and he is generally asymptomatic they aren’t that worried about it and will just monitor with imaging and CA19-9. But I just want to make sure that if CCA develops it is caught as early as possible. If my partner was more worried about it himself I would have already insisted on doing ERC with brushings and FISH. But I have to be careful because we were already fired from his regular IBD doctor because I was too aggressive and there aren’t really any better options than where we are now!
Thanks for listening!
I just went through the Same thing personally. I am always concerned for CCA so I asked for a ca199 because my hospital doesn’t check those routinely, mine came back at 222. My head started spinning and I panicked. They ordered an MRCP And didn’t find anything, but as we know it’s a tough cancer to catch so I picked their brain about an ercp and it was ignored because they don’t believe in the reliability of the test. I got a second opinion from dr Cox at Stanford and he said let’s repeat the test. Even though it doesn’t always mean cancer, it means your cells are producing abnormal proteins. I sure didn’t like that response either, makes me nervous. We repeated the test, and I’m now on low dose vancomycin. Not sure if the vancomycin is working, but my ca199 came down to the normal range and I will just get another mrcp in January. I would have it retested and see if it was just a day where there was some inflammation going on etc. I know how scary and anxiety triggering it is. Good luck!!
Thanks for your message, Nlapeyre! It’s crazy how much the CA19-9 can fluctuate. And it’s hard not to get anxious about it. Hopefully you and my partner will have continued stability for many years. It sounds like you are being very proactive in taking care of your health. I try to tell myself that there is actually a higher chance of NOT getting CCA than getting it, and that at least we are “lucky” to know about PSC early and to be able to monitor for it. I am also hoping that the anxiety will decrease at least somewhat over time as we get used to living with some degree of uncertainty.
Take care,
Katie
CA 19-9 can fluctuate a lot, but can still raise concern appropriately. Has your partner had any recent imaging? My wife wasnt diagnosed with PSC until she had her cholangiocarcinoma diagnosis, so no dr was checking CA19-9- the first sign of cancer was flank pain with an elevated Alk Phosph, and then imaging showed the mass, then CA19-9 was high. But with discussing with other cholangiocarcinoma patients, some had no elevation of CA19-9 while others had it as a good marker. Then again, the PSC itself can cause a fluctuation in CA19-9. I would get imaging done (CT/MRI) over the ERCP if there are no other symptoms, since ercp and brushing are falsely negative or inconclusive in a lot of cholangiocarcinoma patients (anecdotally heard from patients , not sure the actual sensitivity of the test)
Thanks so much for sharing your wife’s experience. I hope you both are doing well now. My partner gets MRCP every 6 months and has a stricture that they are monitoring. I am realizing that CA19-9 is far from adequate as a screening tool for CCA. A review article was just published on markers of CCA in PSC (https://www.ncbi.nlm.nih.gov/m/pubmed/30266579/?i=5&from=primary%20sclerosing%20cholangitis). It’s behind a pay wall but direct message me if you would like a copy.
Best,
Katie
Thanks. Unfortunately after a year treatment free and with her LFTs coming back to normal (on ursodiol since march) and with someone willing to start oral vanco, kathys cholangiocarcinoma came back- not in the liver, but in the skull and lungs. Just when we were starting to learn about and control the PSC, what was probably still lingering post op for my wife grew. I want to thank the people on here for teaching me a little more about PSC, and sharing their experiences (and drs willing to think outside the box) but I probably wont be searching these boards for a while. Good luck to all on here
VTKB,
I’m very sorry to hear this news of your dear wife. Please be assured of my prayers for you and her at this time. Thank you for all you are doing for her during these most difficult circumstances.
