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CA 19-9 high but no malignancy
Hello,
My mom (75 years old) was diagnosed with pancreatic cancer early last year. She had surgery to remove her spleen and half of her pancreas. She later went through six months of chemo which she barely got through. After completing treatment her scans came back clean however, her oncologist told us that her CA 19–9 levels are trending up. At that time they around around 100. Over the course of the next nine months or so she had several CT scans as well as pet scans. She also had signatera tests done which were all negative. However, her CA 19-9 levels continued upwards. Her most recent CA 19-9 came back extremely high at 22000, before that it was 3800 and prior to that around 600-700. She had a petscan done and it did show new FDG activity in her pancreas around her surgical area. Her doctor did a EUS and the biopsy came back NON malignant. Her overall health has been great and continues to be, she walks 1-2 miles daily, is full of energy and she even recently kicked diabetes due to her diet and lifestyle change and has an a1c at 5.3. We just saw her doctor today and were told that even though The biopsy came back non-malignant she wanted to do chemo and radiation therapy. We are getting a second opinion next week but wanted to see if anyone has any thoughts on this. My understanding from all research is that CA 19–9 cannot be used as an official diagnosis and scans need to show proof. We’re concerned about jumping back into treatment as it didn’t go well the last time and given the fact that she feels great now, she feels very hesitant.
Thank you!
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Been having pain right side and center of abdomen for 2 years. First occasionally but recently constant with pinching pain and feeling like I was punched in the back lower rib area. Dr did a CA-19 test just to rule out anything and my numbers came back at 4,800. He didn't believe it and it was repeated 3 weeks later. The number is now 20,000. Had CT and Endoscopic U ultrasound and they say ducts, pancreas and Gall bladder look good. Has anyone ever had such high numbers, but nothing found. My Dr is worried, and I am panicking.
My cancer was found due to a similar pain but was lower right side. Turned out that it was pain from liver lesions.
You need a second opinion.
Those numbers are indicative of something. The sooner you know what it is you can get on with treating it!
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3 ReactionsOne thing you might ask about is a laparoscopic evaluation of your abdomen. My first oncologist told me that some metastatic lesions are very flat, so they don't show up on CT scans because they're not three-dimensional. When I had my staging laparscopy in April, the surgeon said he saw at least one lesion elsewhere from my pancreas, so I'm stage 4. I just had my latest round of CTs last Friday, and my liver and spleen are listed as "unremarkable." That tells me that I still may have flat lesions there, but that the CT scanner can't pick them up. (I plan to ask about them at my appointment Thursday.)
Re the CA 19-9, it seems like these readings can vary from person to person; some have low ones, some high. In general, the CA 19-9 isn't reliable for diagnosis, but is one way to track treatment progress. I would push for more scans and a laparoscopy with a hepatopancreaticbiliary (HPB) surgeon who is skilled at identifying and working with pancreatic cancer. You might also want to get CDs of your scans and seek a second opinion or even a third opinion at another clinic. The sooner you get definitive info, the sooner you can start working on treatment. Best wishes to you!
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3 ReactionsThank you. He did mention about seeing an
oncologist, so I may pursue that route.
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2 Reactionstopaz,
Please follow up with a different team ASAP, preferably at a pancreatic center of excellence.
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3 Reactions@topaz17, just checking in. Have you sought an appointment with an oncologist? Any update?