Happy Birthday to me......

We had the follow up with Dr. Del Chairo scheduled for 3:45pm this afternoon.  The Dr showed up around 4:30, had 2 assistants and a Med Student from Italy with him. He said i'm the most discussed pancreas the multi disciplinary board has ever had.....

With the results of last week's procedures and discussions with Dr. Shah's (GI Dr who did procedures) and Dr. Wani (3 prior EUS's), Del Chairo's suggestion was for us to meet with the head of UC Health's GI department and discuss treatment of Autoimmune Pancreatitis. While in the office with us, Del Chairo called the GI Dr, talked with him about my case (he was familiar as he is the GI Representative on the board) and they were able to schedule us for next Monday. This feels a little like a hail mary before committing to surgery and, it's my understand, even if steroid therapy (cortisone) identifies and solves the pancreatitis, we still have some issues with the growth on the pancreas. It seems to us, 51 weeks after my first office visit, if this was a solution, it could have been discussed and tried a little earlier in the process but, the good thing is the protocol is for 2 weeks of steroids and they would know pretty quickly if it's working.

So, lets say the steroids work and solve the pancreatitis, that leaves us with the "tumor" on my pancreas. I think this is the first time Del Chairo has called it a tumor as they've been referring to it as a growth or lesion or mass, so that's changed and here's where it gets sticky. It's not going away, is currently not cancerous but it's growing, causing me pain while impacting the bile duct and portal vein. Last week, they dropped the stent in so it's helped with the bile duct and my Bilirubin was .9 today (was over 6 in OBX). Today he mentioned the Portal Vein and a concern we dont have a lot of time to make a decision (weeks but probably not months) as the tumor continues to grow, it's growing around the portal vein and at some point, the vein could be engulfed by the tumor and we wouldn't be able to do surgery. While he didnt give us a timeframe, it is an additional concern.

What happens if the steroids do Not work? We'd be back to discussing surgery and, at this point, what surgery. While we've talked a lot about the Whipple (remove a portion of the pancreas), there is a reasonable chance they're end up doing a Total Pancreatectomy because he wouldnt want to leave "something" on the tail of the pancreas.  He didnt rule out the Whipple and even told Jen it's not off the table and possible they could try to biopsy the tail while i'm in surgery, but his job is to clean me up and give me the greatest chance for post surgery success. He's asked a few times how I would feel if the entire pancreas was gone only to find out later there was no cancer?  Not sure I have the luxury to consider it as we might need to just make a decision and live with it.  

This is from Columbia University:

Total Pancreatectomy

In a total pancreatectomy, the entire pancreas is removed. Similar to a Whipple procedure, a portion of the stomach, duodenum, gallbladder, and local lymph nodes are also removed. The spleen may be removed as well. Because the entire pancreas is removed, the patient becomes an insulin-dependent diabetic for life. For this reason, the procedure is only used when disease has spread so extensively throughout the pancreas that healthy tissue cannot be preserved.

Total pancreatectomy is sometimes used prophylactically to prevent onset of pancreatic cancer in patients found to have precancerous conditions like IPMN. While the procedure ensures pancreatic cancer will not develop in the future, it also guarantees insulin-dependent diabetes and should be discussed thoroughly and carefully with your physician. 

Total pancreatectomy typically requires 5 to 7 hours.

Not very appealing and the reason Del Chairo wants to exhaust all other options. At one of the initial meetings, Jennifer asked how aggressive the "lesion" was and he said he would not expect much change over 6 months and, in March, they said it was shrinking. Now, a couple months later, it's spread..... what if we would have done the whipple in January??

Where does that leave us today?  We will meet with the Dr's on Monday to understand how quickly we could get the steroids started, what the side effects are and how long before we know if it's working. In the meantime, when I asked him about the pain in my abdomen, he said I have a tumor growing on my pancreas and it's probably bumping into other "things" causing the pain. Glad they've given me some meds to help....

Thank you for the continued texts, email and calls and the birthday messages. We appreciate the support!

Sam