Almost two months since I update, thought I would vent yet again here.
A "CA19-9" level is a marker excreted from a cancerous tumor. It's useful in showing whether someone has cancer, whether treatment is working, etc. Normal is under 37. My father's was 1750 when his blood was first drawn, and 3200 the day of his first chemo treatment. Median among pancreatic cancer patients is 250, so that was a very bad number for my dad. It can indicate both aggressiveness or potential metasteses. As discussed earlier, they did not do a PET scan, so we dont really know for sure if it spread in a way the CT scan couldn't show.
On the positive, my father's body has responded as well to the chemo as could possibly be hoped for. His CA19-9 has dropped from 3200 to 193. Three days ago, he finished his 6th cycle of chemo and rang the bell supposedly completing his treatment.
Yet I'm devastated. Through my connection to Dr. Truty at the Mayo clinic and review of numerous other studies, I am aware that the only way the Whipple procedure is beneficial is if the CA19-9 level is normalized prior to surgery. A patient essentially goes from a 28 month life expectancy to 60 months+ if CA19-9 is normalized prior to surgery.
But my father's oncologist is telling him that his chronic pancreatitis or bile obstruction could also cause the elevations. He's correct. Problem is, he can't say what that baseline number is that is unrelated to cancer. It could be that those benign factors are causing all, or none of the elevation, he has no idea. But as long as the number is dropping, that's a cancer number dropping, not a benign cause. The oncologist told him they were good with a 200 number, and acted thrilled when he got there and had him ring the bell. So of course it's mission accomplished from my dad's perspective. But I know that he might as well have done nothing if he doesn't normalize that CA19-9. Going from 3200 to 193 is incredible, but only if you think cutting 95% of the seeds off a dandelion pod matters. As long as there are still 5% remaining, they will spread everywhere. The same is true here.
I'm now left fighting against the oncologist, my mother, and my father, all for what I know is my father's only hope. My father wants to be done with chemo, of course, so when the oncologist tells him he's there, he's receptive. My parents want to believe and trust doctors, so they do. I know that his oncologist is following the present standard protocol. He can never be sued. What he's doing is checking the boxes of the presently accepted standard of care. But we know what the best institutions are doing, and they've realized that normalizing CA19-9 is imperative. It will be the standard protocol in 5 years. But this guy only cares about what is accepted now.
I've been trying to explain to my mother for weeks that he needs to have a CA19-9 under 37. Two weeks ago it was 350. Today it was 193. I said thats great, but we still have to get to 37, or hit a plateau which indicates that his elevated CA19-9 is now solely related to his bile duct obstruction and not the cancer. So she said "so would you have been happier if it stayed 350," since a decrease means I think we should continue. That hurt a lot. My parents consider me to be pessimistic. I don't. I think I'm overly rational and logical. Those are what dictate all my decisions. I said I didn't wan't it to stay 350, but if it did, at least it would be a data point to influence my future decisions.
It's just so inconceivable that I know for certain what will give my father the best likelihood of survival, but I'm treated now as though I'm the enemy, because I'm suggesting more suffering to get there. I told my mother that if it were me, I'd continue with treatment until it was normalized, no matter how long it took. She told me I couldn't say that, because I don't understand how bad the chemo is. I said that I agreed, but that if I couldn't take the chemo anymore, I just wouldn't do the Whipple surgery, because I know that the surgery is pointless if you don't achiever the CA19-9 levels in advance of it.
Anyway, just upset this evening. My father is the perfect candidate to be cured. But he has a cancer clinic following 2015 protocol instead of 2025, so my father is thrilled to be done. I now expect to report his demise within 3 years, because he will listen to the outdated oncologist, when i know I could've had 3 more years or more. I hate medicine, and I hate insurance.
