Why CA-19-9 Test not included in annual lab tests

Thanks for your very detailed and informative response

I thank everyone for their responses to my inquiry on why CA 19-9 is not a part of annual lab testing. I learned a lot from these responses and as I mentioned, I was going to ask my PCP why as well. Her response was exactly as mentioned in many of those on this thread….. she would not/could not order the test and said ask my oncologist. I know understand the reasoning, but unfortunately, there doesn’t seem to be an early diagnosis for pancreatic cancer that can be helpful in treatment and cure at this time.
Again, I thank everyone for all your responses. This site has been very helpful in MANY ways!

@altc321 , As you most undoubtedly understand, "would not" and "could not" are two entirely different things. If you want a specific test, it shouldn't be too hard to obtain with some shopping around. Getting insurance to pay for it is a different subject, but I would be quite ticked off at my primary care doc if he refused to order a cheap, simple test, especially if he's already ordering other blood work for me at the same physical. If it's not part of his specialty (and he's not an oncologist, so it's not), my rationale for asking is that we're just collecting data. The lab will tell us if the result is abnormal, and if that's the case, he has discretion or justification to consider a referral. Heck, you can now get full-body MRIs without a referral: https://pancan.org/news/full-body-mri-what-you-need-to-know/ (and Google search can return a list of several providers).

As mentioned earlier, for people with no symptoms and no known risk factors, it's hard to know where to put any focus (or even consider extra testing at all). If you have a reason to specifically be interested in the pancreas, other data (like A1C history and diabetic status) can be good indicators, as well as the Galleri test from Grail. In my case, it was the liver enzymes being abnormally high because of the pancreas tumor blocking my common bile duct that tipped us off. The jaundice that accompanied it also appeared in my eyes a good while before it came out in the skin, but that's all still in the "too little too late" range for a preventative diagnosis. If I'd had the genetic testing (hereditary) in advance, I might have coupled that with my family history and started looking at the pancreas a few years earlier.

Hindsight is 20/20, and I hate to beat dead horses, but all signs point to proactive patients finding and getting what they need a bit sooner than those who aren't. Even that doesn't always solve the problem, given how fast my cancer returned after surgery and 3 DNA-based tests and a biopsy saying it wasn't there.

Anyway, I wish you the best, and wonder about the treatment you're currently getting. I talked to one patient last year whose only mets after surgery were in the lungs. She was getting them radiated when they popped up, and doing rather well.

Yes, I was upset with my PCP response and made it known. I’ve learned a lot on this thread, especially yours and other references to links to get non referral screening tests. I don’t understand the reluctance of some PCP to order test outside of the normal annual health lab tests (CBC, CMP, etc)
Will be looking for another PCP soon.

I’m on Abraxane and Gemzar…7 treatments, every 2 weeks (Mayo Clinic, Jacksonville). So far no major side effects (no nausea or diarrhea). Was prescribed Creon initially but could not get refill since it was out of stock at CVS, but my oncologist substituted Zenpep, which I tolerated better and could swallow the capsules whole, not so for Creon.

Thanks again for your inputs!

The only other factors I can think of that would giving a particular PCP reluctance to order CA19-9 are:

1) It's extra work.

2) He is graded by his employer and/or insurance companies who reimburse his patients based on efficiency, which includes not ordering "unnecessary" tests.

3) It puts extra responsibility and potential liability if you get a normal result, he then tells you it's nothing to worry about, but then you test positive for pancreatic cancer. However, I would consider his refusal to order a test I asked for (if I had PC) a bigger liability than doing the right thing (ordering the test, and then counseling you about the all caveats and possible false negative), which would fall under the category of "doing extra work."

His "out" for not giving you all the caveats and counseling might be that, as a general practitioner, he's not qualified/authorized to do that. If he told you to ask your oncologist, but you don't have an oncologist because there's no suggestion of cancer, then you're in a catch-22.

A close relative of mine was in a similar situation. I can't remember if his PCP ever ordered the CA19-9 test (it was refused on the first request), but since he had evidence of a close relative with pancreatic cancer and a gene mutation related to it, his PCP did at least refer him to a genetic counselor, who ordered the germline (hereditary) Invitae DNA test for him. When that came back positive for the same mutation, he was then referred to a pancreatic oncologist who put him on the high-risk monitoring protocol.

How recent on colonoscopy to elevate CA19-9
Thank you

Based on personal experience the CA 19-9 went above the normal range within a week or so of a colonoscopy. After two weeks it went back to normal. I suspect that any endoscopy procedure, EUS, ERCP or EGD, might do the same. I found an obscure medical reference to this phenomenon, but failed to book-mark it. Also, sit-ups and a dumb bell regime stretching the stomach temporarily raised my CA 19-9.

An interventional gastro doc (the ones who do the EUS and ERCP) told me that a punch in the stomach would temporarily raise CA 19-9.

In view of the foregoing, I surmise that physical strain of the abdominal cavity will temporarily raise CA 19-9.

Let me add, that I am not a medical professional and my comments are based solely on personal experience. Your body may respond differently. Always check with a knowledgeable physician.