Hello,

I must say that I was very sruprised 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 speradic 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