CA 19-9 high but no malignancy
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.
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I am 66 years old and I had a distal pancreatectomy (partial removal of pancreas and the spleen) last July for a cyst on tail of my pancreas. After surgery I was diagnosed as stage 1b pancreatic cancer. The CA was 552 in June (pre surgery) and in August was 74 (pre chemo). My oncologist did include CA monitoring for post chemo, along with scans, but seemed reserved about relying too heavily on the CA numbers. Good luck with the second opinion. Hope this is a little helpful.
@edios1, I hope you saw the helpful post from @ken240.
Edios, your mom must be grateful to have you help with the research and decision-making. I have to agree that getting a second opinion would be wise and hopefully helpful in her situation. To help further give confidence to that decision , you might be interested in this research on the value of second opinions that Mayo did:
– Mayo Clinic researchers demonstrate value of second opinions https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/
The rising tumor markers are confounding. But you're quite right that CA 19-9 levels alone are not typically used as absolute evidence of the presence or the absence of malignant disease. The test is used in conjunction with information from the clinical evaluation of the patient and other diagnostic procedures. @davidgg had a similar situation and may be able to share more.
You've likely seen this already, but here's further info about Cancer Antigen 19-9 (CA 19-9) https://labtestsonline.org/tests/cancer-antigen-19-9
Have potential conditions like cholangitis (infection of the bile ducts), pancreatitis (inflammation of the pancreas), cirrhosis of the liver and bile duct obstruction, such as from gallstones been ruled out?
Kudos to your mom for prioritizing her health, reversing her diabetes and staying active. This news when she is feeling so well must be a real punch in the gut. Tell her to keep up the great work. Being as healthy as she is now will serve her well whatever the outcome of these tests.
I'll be interested to hear at the second opinion appointment next week.
My sense is the lack of malignant cells from a fine needle aspiration may not rule out cancer in the surrounding area as the portion sampled is small.
But, with previous surgery, fluorodeoxyglucose (FDG) uptake and increasing CA 19-9, the doctors may be concerned, and hence want to do the one thing that might help. You mention chemo and radiation … to be clear, was their recommendation chemotherapy (CHT) or chemotherapy radiation therapy (CRT)? The later usually includes oral chemo medicine with radiation.
This helps, thank you!
Thanks for the kind words. We did get a second opinion and the new doctor did not agree with what the original oncologist suggested. We were told CT scans are the best way to go and the new oncologist has ordered a CT and some other blood tests. I’ll follow up once we get all that done
When we spoke with the oncologist she at first wanted to do 2 months of chemo, then she stated maybe they would do CRT.
OK – so, based on my reading (and my sister's circumstances) PET or PET/MRI are very good at detecting cancerous growths, but not as good at the actual definition of those growths. The results of these two types of scans are used to determine next steps.
The terms I have seen applied as they relate to CHT and CRT are "adjuvant" and "neoadjuvant."
Here is a good article on the topic – there are many, many more with increasing depth.
To be more clear – the combination of PET and CT scans.
Been a while so wanted to follow up. Since my mom switched to a new doctor after her last oncologist wanted her to start treatment a couple things came up that I wanted to mention.
First thing her most recent ct scan shows no changes(yay). The second this is regarding her CA19-9 levels..in November her CA19-9 were at 22000! I kept researching and surfing the web for anything and everything.
I want to mention that from April 2022 she has been taking biotin for her hair and nails and while doing research I came across an FDA warning regarding biotin and CA19-9 levels:
When I saw those 2 sites, I stopped giving her Biotin.
She took another CA19-9 test in January 2023 and am happy to report that her CA19-9 levels have dropped to 7000!
Her next CT and CA19-9 test is in March so I will post an update once we have them.