Multiple Endrocrine Neoplasia (MEN) Type 1

Sorry, but did a search of this site on MEN 1 and found no results.  Does anybody here have it also and what treatment are you going with after surgery.

 I was diagnosed Nov 2004 with MEN 1 and followed up with surgery in Apr 2005. 

Now after 3 years, scans have shown several small tumors in my liver that have mastisized from the pancreas.  Doctors then started me on 30 mg of Sandostatin monthly with great results.  Only problem is all the side effects from the sandostatin.

 Just curious as to anyone else with MEN 1 and how they are coping with the diseaes.  I am willing to just talk, console, or learn more about this rare forum of endrocrine cancer and  share stories.

hawki

Ok, Maybe a little more explaination is needed here.

When I was first diagnosed with MEN, my doctors thought it was typical pancreatic cancer.

Although it started in my pancreas, it is a very slow growing type of endrocrine cancer.  No radiation was envolved in my recovery from my surgery to remove the cancer at that time.  I underwent surgery to remove 2/3 of my pancreas, 1/2 of my liver, gall bladder and my spleen.  4+ years later, I am doing fine.

My point is, and not to give false hope to anyone, that my first doctors thought it was pancreatic cancer and gave me little time to decide on treatment.  I got a second opinion and found it to be endrocrine cancer instead, and a whole different approach to my treatment, and the rest of my life.

So with that said, please get a second opinion when you get diagnosed and remember that there is hope.  Certainly don't waste time, but think things through and get the best advice you can.  I can only give my most heartfelt thanks to the doctors at Mayo Clinic in Rochester, MN.

Now, if anybody else has any connection to MEN 1, I am would love to hear there story and share info.