Thank you for your thoughts about this and letting me know your testing schedule. I think a monthly test is still warranted, at least through my next scan in March -- in case the date needs to be moved up.
First, I am continuing with the cancer center that did the surgery and chemo on the mainland for scans and ctDNA tests for recurrence monitoring and expertise. The problem is, they can't order blood tests or any medication (should I need it) in my state (Hawaii), so I also need a local oncologist. There are no Pancreatic specialists locally available. There are many good oncologists for other cancers, but PDAC is rare here as far as cancers are concerned.
Second, I am 18 months from my last chemo and have been NED on all my scans except for a small spot on my liver they have been watching. My CA19-9 has ranged from 7-8, with a high of 20 prior to surgery (stage 1, nodes were clear). My first three ctDNA results were negative. I still have my port as they preferred I keep it in. My next scan is in March 2024. That will be my 2-year scan from my last chemo. I'm 77 and that's part of why they are cautious.
Recurrence is a concern, as you know. To hear a staff member from the local doctor say that I should let them know if I have any symptoms is a "red flag". Sure would be nice if there was an "early warning" system for this cancer! I think four months is too long for someone so close to surgery/treatment (regardless of initial tumor stage), but have no idea how other patients are monitoring their situations and if there is some sort of standard the major cancer centers tend to follow in terms of monitoring. If the consensus is more frequent testing, then I may be able to get some help getting more frequent tests.
@patti303 , now that I see your geographic situation, I understand the rest. 🙂
If you don't have any other realistic choice for a local oncologist, I would be as nice as possible to this one. But maybe voice your concern about how fast you've seen CA19-9 change in others with disastrous results, and (honestly) how you'd be more comfortable continuing the monthly testing trend of your previous specialist, at least until you've gotten a few tests under your belt.
Most oncologists agree that raw CA19-9 numbers and blind testing of people with no history or risk factors is not good as a diagnostic tool, but now that you've had PDAC and know your CA19-9 history and recent normal numbers, I think many would agree that a rising trend is reason enough to expedite other testing.
Aside from ctDNA, imaging, and symptoms, what else do you have to go on? CA19-9 is the easiest and cheapest, thus realistic to do most often. Offer to self-pay if you can find a reasonably priced lab. mdsave.com and "Any Lab Test Now" are two avenues that might find you a manageable price. If the local oncologist still doesn't agree to it, see if your local PCP will order it.
After your hard-earned success getting to NED at this point, recurrence with metastasis is the last thing you need!
Aloha -- mm