Trying to locate doctors who have seen the most cases for second opinion as soon as possible.
I was diagnosed with ADPAca in May 2011. After reading through many posts and other research, it seems no hospital has seen a lot of this type of cancer, although Mayo and Sloan seem to be mentioned the most.
I was treated in CT and my hand surgeon (I had a finger amputation and SLNB) spoke with Sloan and the doctor there said they had treated 7 cases. My treatment was pretty much the same as another poster at the time who was going through Mayo.
Since my SLNB was negative, I will now get checked annually with a CT scan of the lungs. If anything is found, that's when things get more challenging - it seems there is no standard procedure at that point.
Please do continue to post and let those who follow the thread know how you are doing and if you uncover any useful information.
My good friend was just diagnosed with this, he had the finger tumor for some time but was misdiagnosed as a cyst. He goes in for surgery/amputation on his finger feb 15th. We will know more after that, but the scans showed masses in the lungs as well.