Rare Cancer Support Forum

I am seeking others in my area who have or have had this rare type of cancer. I am looking for information about doctors in this area as well.

Hi, Tanya.

I live in Oregon, but our son is a teaching doctor (kind of like "House") in SLC. When I was diagnosed, he found nobody experienced with ACC; he and his friends did a great deal of research for me, however, and I ended up being treated at the U of Washington. The doctors in Oregon also couldn't help me, but sent me to UW, whose doctors did, and I'm fine now. My ACC was in my trachea. Please email me if I can provide any more specific information you might want.

Jack Huhtala

The U of W is where I am afraid I need to be going. My story is long and I have never really done more than sum it up on here. I was 12 when I was diagnosed. And living in Texas. We flew to the U of W when I was 15 by military med flight for my neutron radiation because it came back with a vengeance. It kinda came back when I was 18 but some miracle seemed to make it totally disappear. I have had lots of problems because of the neutron radiation. I came to Utah to finish school but alas another medical thing is standing in my way once again as I had to have surgery to replace my jaw. But I have been getting treatment at the Huntsman Cancer Institute in SLC and I don't feel that confident in their ability to take care of me. Its a long story...but there are things that are making me question some things now. But since I was 12 at diagnosis no insurance will take me now of course so I ended up on disability and on medicare and medicaid for medical coverage which makes getting my second opinion at the U of W a little hard. I am not yet sure how it will get paid for if I can do it that is. Does any of this make sense?