Thanks to all for your encouragement and input!
PCL: Sorry; I wasn't very concise. The following fills in the blanks:
1st diagnosis - September, 2011
Whipple - September, 2011 (result was distal tumor, no invasion, small. The only issue was the cells were a little closer to margin than he would have liked.)
Radiation - December, 2011 w/5FU
Chemo - mid-January, 2012 - May, 2012 w/gemcitabine and cisplatin
Multiple CT scans - all clear (every 3 months from December, 2011)
Continued abdominal discomfort - all along (inflammation noted on CT scans, but nothing alarming, just part of the recovery)
Recent routine follow-up CT scan in September, 2012 - all clear
CT scans always accompanied by blood work - no issues in September, 2012
Goshen - Blood work - mid-December, 2012 - elevated CA 19-9 and CEA (noted that CA 19-9 was tripled from September, 2012)
Goshen - Follow-up CT scan as a result of elevated CA 19-9 - mid-December, 2012) - nothing remarkable to explain elevated markers. 2 4mm spots on Rt. lung....oncologist did not express concern over these and remarked they are not related to elevated markers.
Goshen - Tumor Board Meeting this past week - group recommended Endoscopy to check bile duct area
Goshen - Endoscopy scheduled - Monday morning (12/31/12)
His surgery was at Indiana Univ. hospital by the hepatobiliary specialist, Dr. Pitt. Dr. Pitt was a long-time surgeon at Johns Hopkins and is chairman of the medical school at IUPUI. He has contributed multiple research articles on hepatobiliary cancers and surgery in various journals. We have a high level of confidence in him. Unfortunately, he has retired from the surgical side of things; his fellow has stepped into his shoes. We also have confidence in him. Johns Hopkins and Duke background. They have both expressed a lot of confidence in a good long-term prognosis. They think he will do really well.
But......a 2nd opinion has been on my mind now that this elevation has occurred. I'm glad to hear that confirmation from you. Perhaps we see what the endoscopy shows and then pursue another opinion?
His medical oncologist was referred to us by the Indianapolis medical oncologist. He practiced in South Bend and recently moved back to the cancer program at IU Health - Goshen. He has been a great advocate.
So.......2nd opinion is in order? Mayo? Does anyone have experience with Johns Hopkins? It's hard to determine where to go....but I am very appreciative of your experiences at Mayo. Thanks!!!
I'm still wondering about undiagnosed chronic pancreatitis. Course, I feel like I have a medical degree after all of this! Anyway...I'm going to bring this up as well.
Thanks so so so much for your feedback. I REALLY appreciate your comments. Feels like light.