I completed day 1 of a 3-day MIBG I scan process, thanks to my primary care physician!! I cannot say enough good things about him...he really cares and is willing to work with my doctors in New Orleans, and had no problem ordering the scan for me (at Mercy).
I felt very comfortable going to my appointment this morning, unlike the feelings I always had when I went to OU Medical Center, so I take that as a good sign. The iodine injection went well and barely hurt, and the staff in nuclear medicine is very helpful and informative. I was ready for the scan to be over when I was finally told I had 4 minutes left...it was a LONG 3 hours of lying flat on my back without moving. It took a moment for my arms and legs to begin working again, and I get to go through the process again tomorrow.
I was given no indication of what was seen, if anything, so I'm anxious to be done with the process and get the results. The Octreotide scan supposedly was clear, but when I received a copy of the report from OU Medical Center, it said the scan was inconclusive and that a CT scan might be in order. The following week I had a CT scan, and it indicated that some lymph nodes in my cardiophrenic area are enlarged. (The cardiophrenic area is between the heart and diaphragm.) I don't know if that's anything to be concerned about, but I guess I'll know after my trip to New Orleans next week.
My primary care physician is going to refer me to a new oncologist (my 3rd), one in the Mercy system, and I'm glad for that. My stipulations were that he/she has to be willing to work with the specialists in New Orleans AND be aggressive in my treatment. I don't want to twiddle my thumbs just because I have no symptoms at the present time...I want removal or treatment or whatever it takes. I may always have carcinoid, but I don't intend to give it the run of my body!
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