Haven't written in quite awhile. Had major surgery in April which showed "islet cell hyperplasia" in the endocrine pancreas...they were looking for a neuroendocrine tumor but none was found. In meantime, I am anemic so had a bone marrow biopsy last week. The results say "immunostain for CD117 highlights rare mast cells." The hematologist who knows little about MCAS told me "lots of people's results say that." Since I have had elevated urine PG F2 -24 hr urines, Dr. Castells has said I have MCAS but it could be secondary to something else. I also have had 3 neuroendocrine scans that lit up in pancreas but as I said, only hyperplasia was seen in open, exploratory surgery and the NET doc said it may never become a tumor, he doesn't know....and isn't sure if my flushing and other symptoms are even from the hyperplasia or something else.
I am wondering if any of you have had this result in a bone marrow biopsy and how to find out if it means anything relevant to MCAS?? I will try to get in touch with Dr. Castells, but it is not always easy. Thanks so much. Debbie