← Return to CA19-9 going up and back pain at night - recurrence?

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@stageivsurvivor

With CA19-9 not a specific marker solely to PDAC cancer but also occurs in benign conditions as well, oncologists won’t jump the gun and prescribe chemo unless other methods are done to confirm recurrence. The elevation you mention is well within a range that could be attributed to an inflammatory situation. Oncologists I have association with as a patient advocate with several national cancer organizations in the GI space generally start raising an eyebrow when a level of 250 is reached. I know of one post-Whipple patient whose CA19-9 at 5 years out is and has been 600 for a number of years and has remained steady with no disease detected. It is his new normal.

ctDNA is continually improving and is now very accurate for colon cancers. I just got off a Zoom call with a committee of GI oncologists and asked that question on accuracy improvements. I’ve been familiar with ctDNA for minimal residual disease having had a career in cancer and immunology research as well as a long-term survivor of stage IV pancreatic cancer. ctDNA has been used for long-term surveillance of my case since 2014. I have a BRCA mutation where the accuracy in ctDNA measurements is the highest. It is done quarterly and I have a low dose CT for chest and an MRI for abdomen every 6 months. The test results have always been in concordance.

Improving the accuracy of ctDNA in pancreas cancers is ongoing. The highest accuracy achieved in in those with BRCA mutations at 89.%. That means in 11% that have recurrence, it won’t be detected any earlier than by conventional imaging methods. In the 89% group, ctDNA is capable of detecting dna fragments of metastasis related to the primary tumor about 8 weeks earlier. Oncologists are still on the fence about beginning treatment before a confirmatory test. This was the case in treating colon cancers but as ctDNA improved in that area, oncologists became more comfortable with starting treatment earlier as they were more assured it was recurrence and not due to some inflammatory response.

Oncologists follow treatment protocols from the National Comprehensive Cancer Network based on recommendations from a working group oncology experts. These protocols are periodically reviewed and modified in conjunction with new findings from clinical studies. No oncologist I am aware of would use chemotherapy on the assumption of disease. There are side effects with chemo and adverse events of more serious nature that can cause permanent damage to tissues and organs-hence the cautious approach when a patient says start me back on chemo without confirmatory evidence of disease. When something is not visualized by CT or MRI, then it is worth inquiring about doing a PET scan which looks for increased metabolic activity in the body using a radioactive tracer attached to a sugar molecule that a cell with higher metabolic activity will utilize at a faster rate than surrounding normal cells.

Going back to ctDNA in cancers of the pancreas where the best accuracy achieve to date has been in BRCA mutations at 89%, in is lower in the other mutation types and drops to a low of 64%. There are many companies with ctDNA testing and all are actively working on improving the accuracy in pancreatic cancer as they did in colon and other solid tumor cancers. It is a matter of time and iterations in improving the methodology that higher accuracy will be achieved.

A short list on some benign conditions that can lead to an elevation of CA19-9:
Non-cancerous conditions that can cause high CA 19-9 levels include:
* Gallstones
* Biliary infection (cholangitis)
* Blockage of the bile duct (jaundice)
* Pancreatitis (swelling of the pancreas)
* Cystic fibrosis
* Liver disease

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Replies to "With CA19-9 not a specific marker solely to PDAC cancer but also occurs in benign conditions..."

@stageivsurvivor ,

Thanks very much for the update on where ctDNA testing stands, but I have a question regarding your comment:

"No oncologist I am aware of would use chemotherapy on the assumption of disease. "

Isn't that assumption the basis for all adjuvant post-op chemo after R0 resection?

Similarly, isn't the neoadjuvant philosophy of treating "resectable" disease when imaging (PET/CT/MRI) only shows a primary tumor based on the assumption that disease also lies elsewhere?

Also the comment:

"There are side effects with chemo and adverse events of more serious nature that can cause permanent damage to tissues and organs-hence the cautious approach when a patient says start me back on chemo without confirmatory evidence of disease."

I think there is a boundary where an oncologist can make the judgment call about an otherwise healthy patient who responded well to Folfirinox (for pre-op disease control) and also tolerated it well going back on it and being able to recognize if new side effects were becoming problematic.

In the video that I frequently cite, https://youtu.be/nd1l5-GrdVQ?si=eN53OyMbTZPHPWPb&t=192 at the 3:13 mark, Dr, Katz discusses pre-op (at diagnosis) CA19-9 levels and overall survival outcomes. It appears/implies he is using CA19-9 level as a proxy for the degree/probability of metastasis in patients considered anatomically resectable. The outcomes are notably worse for patients starting above 500 and significantly worse if above 1000. It only took about 6 weeks for my CA19-9 to go from 277 to 677, and my disease was indeed metastatic already at the 277 reading. My big concern for anyone in this situation is being able to make a quick enough response to avoid a similar fate.

Later in the video (6:52), Dr. Katz points out that of patients who had neoadjuvant therapy, approximately 80% have a recurrence after surgery, and approximately 80% of them recur within two years. It would seem assumption of disease is the winning bet more often than not.

FWIW, I have not even been able to bribe an oncologist into doing another PET scan since the one that followed my initial diagnosis/EUS. My surgeon has told me his MRIs detect smaller tumors than PET and are able to show characteristics that basically distinguish live tumor tissue from necrotic tissue, so he didn't expect sugar uptake on PET to yield any new info on me at this point, and that chest CT + Abd/Pelvic MRI would catch the first locations any new mets were likely to deposit themselves.

Thanks again,

--mm