2 questions: Interpretation of CA19-9. SBRT methods.

It is not 100% indicative of anything and is not uses solely for clinical decisions.

Anyone have experience with lower back pain from mid to lower back and flank. Pain is not severe but annoying

I'm one of those people where the CA19-9 never went out of range. There are some people where it spikes and others where nothing much seems to change. Prior to surgery I was 20 (normal range from my testing company is 3 to 32), after surgery 7-8 range. It was mentioned that gall stones can cause an increase in CA19-9 also. Regardless, they check mine monthly as part of my CBC and I download each test to track everything myself, as I knew what it all meant.

I was told by my oncologist that the only way for them to diagnose you as cancer free is by clear CT scans. The CA19-9 is fine but is not the be all, end all test that we wish it were. Your CA19-9 can be elevated for many reasons…even having pancreatitis can cause it to be elevated.

My husband has back pain too, and describes it similarly--not excruciating, but it is "annoying". He has trouble lying on his back in totally flat position, but can tolerate a recliner well. (Usually a side sleeper at night.) On the two days after chemo when he has to wear a bag with more meds, he sleeps in the recliner for those 2 nights because he is afraid he will roll over on the bag and pull it out of his port. The recliner lies almost flat, but because it is not totally flat, it is more comfortable. It also has a lumbar support. We looked at lots of recliners for him, and this one works great for him. (I can give you the link at Bobs Furniture if you'd like.) Also, he takes hot baths, sometimes more than one a day, and that seems to help too. His Dr. gave him oxy for the pain, but he takes only one pill right before bed to sleep. He still works at home during day, so needs to be "sharp" during the day.

Thanks. Do ya'll know the source of the pain?

I agree with your comment. Thanks also for reminding me that pancreatitis itself can cause it to be elevated. My last scan noted "mild changes of acute pancreatitus have resolved"

Awesome! Just keep eating healthy & small meals. Lots of water!

Hi Patti303. Sounds like they caught it early and were able to nip it in the bud. My husband, Stage IV pancreatic adenocarcinoma (tail), growing into the spleen. Diagnosed with lung adenocarcinoma (NSCLC) in May of 2021. They started testing his CA-19-9 in October of 2022, at which time it was 2,201. Each month there after showed 9,464, 10,610, 30,893, 75,735 (this month). Method Siemens. I dread getting the numbers every month. He just started on Everolimus. I wish you continued success in your journey, Patti303!

CA19-9 is not a universal maker for PDAC. It does spike for some PDACs, but not others. I'm not an oncologist or in anyway qualified to know why that's the case. Here's one of several quick overviews of CA19-9: "https://medlineplus.gov/lab-tests/ca-19-9-blood-test-pancreatic-cancer/".

So, while I wish they "nipped my cancer in the bud", only time will tell. Since my CA19-9 doesn't spike, it leaves me without a blood marker. They can only see if surgery, chemo or "whatever" worked by scanning for new tumors. They have no idea what's going on in the interim. If nothing is found, well, guess "something" worked. If another tumor shows up somewhere, then "something" didn't work.

There is one company that has a liquid biopsy, or circulating tumor DNA (ctDNA) test approved for PDAC called Natera. I have no idea how effective it is. So far, they were not able to get a viable sample from my tumor. Maybe someone in this group can comment on their results. Keep in mind, the test has to find that DNA tiny mutation in the blood and the blood draw has to be at the exact time it's passing by the draw area. On the positive side, there are several research labs working on ctDNA products. Also, I recently read about Mayo Clinic beta testing a new scanner and doping type to really up the resolution to help spot PDAC earlier than present capabilities. Sure hope it works, not only for earlier detection but for ongoing surveillance.

My best wishes to you and your husband. Sounds like he's very fortunate you are in his corner.

FYI:
I just found this interesting info for those whose CA19-9 doesn't spike:
"Low or negative CA19-9 expression in individuals who are genotypically Lewis antigen null (i.e., le/le with mutations in both copies of the FUT3 gene) further limits the reliability of this biomarker for PDAC detection."

From "https://www.medpagetoday.com/gastroenterology/pancreaticdiseases/97283"