July 28, 2017 at 4:38 pm #95347FayParticipant
Kris and Mary,
For my mom, what finally showed the obvious was a CT that was a specific pancreas, liver protocol, ordered by her hepatobiliary surgeon. Not the usual CT abdomen, pelvis that her oncologist was ordering. So I think the type of scan, protocol used, with or without contrast, all make a big difference when trying to figure out what’s going on. I forgot to mention this earlier.
Love you all,
FayJuly 28, 2017 at 1:29 pm #95346bglassModerator
Your point is an important one. If CA 19-9 is being monitored and it rises (per one of my doctors, doubling or tripling is the warning bell), then an intense effort should kick in to figure out why. BUT, if CA 19-9 stays in the normal range, it is not a guarantee that all is well. This is why — as you so rightly point out — the broad range of indicators needs to be carefully watched, including periodic scans and patient symptoms.
I wish there was more effort by the doctors and researchers to define what surveillance should be for this cancer given how difficult it can be to detect and monitor.
Regards, MaryJuly 28, 2017 at 8:42 am #95345FayParticipant
I think it is safest to look at the entire clinical picture (as in all signs and symptoms) and not to get too hung up on the number. My mother’s CA 19-9 was around 130 at the time of diagnosis and within normal range (around 20 to 25 for her) post resection. Despite extensive disease recurrence which was finally detected on CT five months post resection, her CA 19-9 were still in the 20 – 25 range. I’m disheartened to say that my sister and I fought hard to convince the oncologist not to get too hung up on that number, as well as other providers, because her symptoms were very progressive in nature post resection. So I think the most important thing is to look at the entire constellation of signs (including CA 19-9) and symptoms. I should also mention that my mom has the rarest form of cholangiocarcinoma from what we have been told – papillary mucinous subtype and I’m not sure if perhaps this changes things. But this has been our experience thus far.
God bless and hugs to all,
FayJuly 25, 2017 at 7:00 pm #95344mbachiniModerator
Mary made great points. My CA19-9 has never been a good indicator throughout my diagnosis. In fact, the only time mine was elevated was during treatment, when there was shrinkage occurring from the immunotherapy treatment. I have talked with several patients who follow their CA19-9 closely and have a handle on changes and swear by the rise and fall of these numbers. I think it is another tool in the tool box, but we have to put the whole picture together with scans, bloodwork and symptoms.
MelindaJuly 25, 2017 at 4:44 pm #95343marionsModerator
Kris….don’t have much to add to Mary’s posting other than many factors can influence rise and fall of the CA 19-9 marker. The most important issue is the long term trend – up or down. In your case it may take some time to regulate. We tend to get stuck on CA 19-9 because it is a concrete, a number. Do you have a CT coming up?
MarionJuly 25, 2017 at 3:37 pm #95342bglassModerator
My CA 19-9 was 115 at diagnosis, then 16 then 6 after resection. It started climbing with subsequent chemo and especially radiation up to 14, then has eased back to a range between 6 and 8.
I am going to get a little past my own comprehension of the science now. There are different subgroups within people who express CA-19-9, and the average or median CA-19-9 level varies among these subgroups. My CA-19-9 of 6 could be just as normal as someone else’s 22. So my understanding is doctors look at what is normal for the individual patient rather than comparing across patients. I was told by an oncologist that my CA 19-9 runs low and for this reason might not be as good an indicator as with someone whose number varies more widely. I was also told that doubling or tripling would be the tripwire to investigate if something concerning is afoot.
CA 19-9 can rise with treatment, whether chemo or radiation. In my case it more than doubled although still below the upper limit. It can also rise with progression or recurrence; for this reason doctors look at CA-19-9 as an indicator but look at other factors as well.
Regards, MaryJuly 25, 2017 at 3:04 pm #13550jnetsirk8Member
Hello all ~
Curious what other’s CA 19-9 levels are. Mine jump all over the place. My oncologist said while it is somewhat of an indicator, it is not the best for this type of cancer. Thoughts?
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