Is it possible to have very high CEA and CA19-9 without cancer?

Thank you for your comment gardenlady!
The lung specialist opted for drawing fluid from the lung to see if that gives us answers before attempting a lung biopsy. The verdict is in: The fluid contained lung cancer cells. This is my husband's 4th primary tumor in about 6 years. He had unrelated pancreatic and throat cancers at same time, followed by skin cancer a couple of years later, and now the lungs. Apparently, he is one of those unlucky people who have no resistance against cancer. According to his oncologist (due to liver, kidney and other health issues) chemo is out of the question this time. Radiation is also out on account of cancer already in the plural fluid, meaning it has spread already. A possible treatment he has to be tested for is targeted therapy. He'll be having a blood test Monday looking for genetic mutations that could help with targeting the cancer cells specifically with fewer side effects than systemic chemo infusion. If that doesn't pan out, he may be out of options. From everything I'm reading online, prognosis is pretty grim: A few months.
I want to thank you all for your support, suggestions, and shared experiences. I will probably be seeking support specific to lung cancer now. Best wishes for your continued health journeys!

You may want to ask for them to look for Lynch syndrome. I suppose they would find that through genetic testing

My thoughts are with you during this difficult time.

Have you tried Metabolic Oncology. It is NOT Standard of Care treatment. It works to starve cancer. I would suggest reading "How to Starve Cancer". It may give you hope and a path forward.

My husband is on the recommended protocol along with Folfironox. So far he is progressing well.

My CA 19 recently came back at 1277. I have had a PET scan and CT scan but nothing showed up. Does anyone know why my number would be so high with no cancer showing? It is very worrisome. I have been through chemo, radiation and surgery for pancreatic cancer.
Prayers for all.
Becky

Sorry to hear about your elevated CA 19-9 result. If it were me, having already had those therapies, I would be all over my oncologist demanding additional evaluations. CA 19-9 and other cancer antigens are notoriously poor on initial diagnosis, but apparently pretty good at tracking disease progress. Re the scan results, my oncologist told me that CT scans can't identify any lesions that are smaller than 1 cm. I've also read less than 1.5 cm. The lesions also have to be 3D; that is, if they're very flat, the CT scan can't pick them up. In my case, I was given a laparoscopic visual check to stage my cancer the week after my biopsy came up positive. The surgeon said he could see flat lesions, but the CT scan didn't show them. So again, you might have new activity, but it's just too small for the CT scan to see.

Now, all that said, yes, there are a variety of noncancerous disorders that can elevate CA 19-9. I'm sure I'm not remembering them all, but they can include pancreatitis, liver disease, gallstones, and other things. I know this has been mentioned on the board before, so you might be able to find a more complete list. Anyway, my point remains: Since you've already had multiple treatments and the CA 19-9 is now elevated, I would really push for additional assessments to pin things down. Good luck!

Other tests are endoscopic ultrasound, MRCP. ctDNA which would be specific for cancer. What about the CRP? If you are not being seen at a center of excellent or at a top cancer center. Keep after it.

Where can one find a metabolic oncologist? I’ve been trying the protocol from the book, but it’s too difficult

becky,

I am not a medical professional.

My sense from reading thousands of threads:
- being treated at a center of excellence (ex: Mayo Rochester, MSK, Farber, MD Anderson) significantly increases you chance of recovery
- continuing chemo following Whipple is essential, although for reasons I don't understand (except for cost, or patient condition), this is not done

IMO, if you have high CA 19-9 following chemo and Whipple, I would review what it was prior, during chemo, before Whipple, after Whipple - then insist on restarting chemo until the high number can be evaluated through other means.

I started with Care Oncology and they prescribed Metformin, Atorvastatin, doxycycline and Mebendazole. They provide remote services. Beyond them it is tough. I have spent hours in study but Jane McClelland also has an off-label drugs facebook page. If you search for Jane McClelland on facebook you will see it. She also has an online training class that I found a little easier to understand. We also started seeing a naturapath.

I wish I could find a Metabolic Oncologist but haven’t been successful yet. Have had to make desired medication decision on our own. Its a little lonely. All this said, we are still taking chemo ( Folfironox) every 2 weeks. PANC is too agressive to not try to throw everything we can at it.