Mar 07, 2011
Today is my 5 year anniversary for removal of my adrenal glands. It has been an up and down journey.
Recently, I have seen a doctor about my elevated ACTH and my possible Nelson's syndrome. There is also a small possibility that there could be an ectopic (carcinoid) source as well. I have been asking for tests but it has been slow much to my frustration but I finally found a doctor that understood so he has ordered scans to look for the ectopic sources first and then after the results come back, the decision has to be made.
If I have just radiation, they will have to radiate widely since the area is not well defined. If they do surgery first, then I may still have to have radiation after the surgery but it should be less since the area will be defined.
I have been avoiding radiation to use as a last resort and the removal of the entire pituitary is a drastic move so neither of these options were what I expected or wanted. However, these seem to be the only options open to me per the doctor once ectopic is ruled out.
It is a lot to think about. I still have a PET scan and a CT to do before the decision has to be made.