@wjk, I'm wondering why they didn't biopsy the tumor when they inserted the stent. My story has some similarities but some differences.

On 1-2-23, I began itching all over. It worsened, plus I became fatigued and lost my appetite, so I finally went to an ER on 2-13-23. I was jaundiced (didn't know that bc my apt. is so dark), my urine was dark, and I'd lost 14 lb in 6 weeks (I'm 5 ft tall, and that's a rapid loss for me).

Docs determined that there was a mass in my pancreas (I didn't think to ask its size) and that it was blocking my bile duct (hence all the itching -- elevated bilirubin). A stent was inserted, and during the ERCP the tumor was biopsied. My CA 19-9 was 387. Medication (cholestyramine, then ursodiol) helped with the symptoms and might have helped bring down my bilirubin (though I think the stent mostly did that).

I've just completed my 6th round of chemo (Folfirinox); after my 5th, my CA19-9 had dropped from 387 to 163. It's not clear whether I'm a candidate for surgery (there are some ambiguous nodules on my lungs that could indicate metastasis). At present, the plan is for at least 2 more rounds of chemo; my onc. is discussing my case next Wed. with the hospital's GI conference, to determine the next step (could be radiation, or radiation + surgery, or surgery, or more chemo).

I don't know whether any of this is helpful; I wish you all the best.