Nov 11, 2011 - 12:18 pm
This could turn out to be the best site I have ever seen/posted to!! I am a 22 year pheochromocytoma survivor. I know, it's rare, and alot of people have never heard of it. I get that alot. However, it is very real!! I am post 6 surgeries to remove tumors, now surgery is no longer an option. Have had right adrenal gland, lobe of my liver, and right kidney removed. Present day radiation and chemo treatments have little to no effect on the tumors, so no option there either. There have been 2 clinical trials at Mayo, but neither showed any long term promise. Another is on the horizon, but still almost 2 years away. Now I have and 11mm tumor in my left kidney! Docs do not believe this is related to the pheo, I go back to Mayo to see kidney specialist next week. My doc there tells me they will probably do radiotherapy ablation to try and destroy the tumor. Did my studying on that and have my list of ?s ready for the new docs. Not that there is a good time for a diagnoses like this, but really poor timing here; my husband and I petitioned for custody of a 7 month old family member! Now so much is up in the air, not knowing what to expect..AGAIN!! Thanks for listening, and feedback would be so welcome! Anyone who reads this have a terrific day!