Cancer update - 11/5

Well, I had my upper endoscopy and abdominal ultrasound yesterday. Both tests came back negative as the GI oncologist had thought.

My endoscopy was scheduled for 11:15 a.m. and they had called that they had had a cancellation so if I could get in earlier, that would be better. I got there at 10:45 thinking that I would be in and out quickly and would be done in plenty of time to make my abdominal ultrasound appointment at 2:00 p.m. Unfortunately that was not the case.

I was taken back to pre-op almost immediately, but then I waited, and waited, and waited. At 12:15, an hour after my original appointment time, they came back to tell me that they were “running behind” and that it would probably be at least another hour before I would be taken in for the procedure! This was only to be a 15-20 minute procedure but with 30 minute to 1 hour recovery time, so the chances of making the ultrasound by 2 looked slim. We called the ultrasound office and luckily they said they could still fit me in as long as I made it there before 4.

Well, 1:15 came and went, 1:30 came and went, and so on. Finally at about 2:00, I was taken back (almost 3 hours late). The procedure went fairly quickly and came back completely negative; they didn’t have to biopsy anything. I was discharged at 3:30 and we booked it to Shands main hospital for the ultrasound. Needless to say it is a labyrinth of corridors to get to the ultrasound desk and I was still half out of it from the anesthesia, but I managed to make it with only one wrong turn. I was almost immediately taken back into the ultrasound room.

This is the most frustrating part of it all. The ultrasound tech said, “So we’re scanning primarily your liver, is that it?” I explained about the cancer and they were looking for a primary tumor in the GI tract, specifically the pancreas. Here’s the best part. She says, “The pancreas? Why would your doctor order an abdominal ultrasound for your pancreas? If I were to choose a procedure to look at your pancreas, ultrasound would be the last tool I would use!” She explained that, from the skin surface downward, the ultrasound would have to pass through the liver and then the stomach. The pancreas lies behind the stomach. She said they can always clearly see the liver and the stomach, but hardly ever the pancreas. She said also with the fact that they had to inflate my abdomen for the endoscopy would make it impossible as the ultrasound doesn’t work through air, but she assured me that, even had it not been for that, there would still have been no way to see my pancreas.

She left for a few minutes and compared the ultrasound pictures with the abdominal CT scan I had earlier at Shands. She came back to let me know that my liver and stomach were fine and that every other abdominal organ she could scan matched perfectly with the CT scan. She said again that she honestly didn’t know why they even ordered the ultrasound if they had already done the CT scan because if something didn’t show up in that, it definitely wouldn’t in an ultrasound. So needless to say this makes me have even less confidence in the medical oncologist and his office staff than before (which was low enough) and makes me even more confident that my PCP and I have made the right decision in moving on to Moffitt.

Along those lines, I got a call from my PCP’s referral nurse this morning. The original neuroendocrine oncologist they wanted me to see is booked up through January! There is another doctor in his practice, who can see me on December 11 at 2:00 p.m. Yikes! So great, now I have to wait over a month to be seen! This is getting so frustrating. They say this is a very slow growing cancer, and it’s a good thing at this rate. All this started back in early August and I may not get any more information until December! I guess that’s better than January, but I had hoped for sooner.

So I think I’m finally done with Shands. The endoscopy doctor said if the upper endoscopy came back negative that they may order a colonoscopy including a scan of the ileum (the final third of the small intestine which the endoscopy can’t reach). I’m going to confer with my PCP to see whether he thinks this will be necessary or whether we should wait until I am seen at Moffitt. I had a colonoscopy back in January 2008 that came back negative, but we’re not sure if the ileum was scanned. I’ll see what Shands comes back with and confer with my PCP and see what comes out of that. I sure hope to avoid a colonoscopy as once was enough. The prep for that is horrendous. I’ll let you know what I hear on that.

So it looks like we’re in a holding pattern until December 11. I’ll let you all know when I know anything else. Thank you all so much for continuing to pray for me and for your thoughts and encouragement. They mean so much more to me than I can ever express.