Hello,
I must say that I was very surprised to find a site that has to deal with MEN’s. I found out about Medullary cancer in 1988, when I was 22 and it had already spread to the surrounding area. Had three neck surgeries the first year and a number of others for a total of 10 to this point in time. I don’t have many glands left! They thought that I had sporadic Medullary until 2003. This is when I found out about Pheo’s and MEN 2 A. Who knew! I thought I was just doing a good job at losing weight.
Then my heart started feeling funny. After numerous trips to the doctors with no luck. I was starting to worry but I just kept going back as I knew there was something wrong. A few of them wanted to put me on antidepressant meds as they thought I was having anxiety issues. Finally someone checked my adrenaline levels. My adrenaline levels were very high and they wanted me to stop doing everything driving, school etc. I had two weeks left to school and there was no way I was stopping at this point. As much as they did not want me to, I did finish school and when I was done, I was in the hospital within 48 hours getting my right adrenal gland taken out.
Now to the good part 
I am at a crossroads and truely don’t know what to do. This is the first time in almost 24 years that I have not made a nano second decision about surgery. I have another tumor on my left adrenal gland as well as a few in my liver and more in my neck again. One doctor seems to think that the adrenal tumor may just be Medullary and that I can wait a bit before having it out. A second doctor feels that it is a Pheo. I was suppose to have the adrenal gland out Nov 8th in Boston but I canceled it. I started reading about Addison’s Disease. This just does not sound like an easy road to walk down. I was looking or hoping for some feedback about what it is like to have to deal with Addison’s. I am suppose to go back for another MRI in Febuary. Some how I need to come to terms with this and to be able to touch base with someone that has already walked down this road. It would be a great help to me.
I feel that I am starting to climb down the other side of the hill so to say. Maybe I am just scared.
Many Thanks,
Kate from NH
