I an a first time user to this message board, but have used the one available through Johns Hopkins occasionally. I had a 14cm islet cell tumor removed at Mayo in MN in 1998 from tail of pancreas, with no subsequent chemo or radiation. Then had recurrence in 2004 on head of pancreas. Had Cyberknife radiation at St. Joseph's Hospital in St. Paul, MN. It stunned the DNA of the tumor cells enough to stop their replication/growth thus far. The Cyberknife destroyed the rest of the pancreas so I am now on insulin. Also have continueing digestive problems, but overall am doing very well and am blessed/privileged with every day I have. I am 51 now, with 3 boys (ages 20, 19, 14). My oncologists have said it is unlikely that the Cyberknife radiation killed all of the cancerous cells and at some point they may start to grow again. So I am thinking ahead to next options. I haven't had an OctreoScan yet, but am considering Octreotide if it looks like I am a candidate for it.
Two questions for the others of you with islet cell:
1) If you have used octreotide(Sandostatin), what results have you received from it with regard to tumor growth and relief of digestive symptoms?
2) What medical experts do you know of for islet cell tumors?
Thanks and blessings to all of you!
GardenVon