Utah Adenoid Cystic Carcinoma

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Utah Adenoid Cystic Carcinoma

Postby Tanya99 » Sat Aug 01, 2009 4:16 pm

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.
Tanya99
Active Member
Active Member
 
Posts: 47
Joined: Sun May 20, 2007 11:51 am
Cancer Diagnosis: Adeniod Cystic Carcinoma
Relationship To Patient: Self

Re: Utah Adenoid Cystic Carcinoma

Postby hu8tala » Sat Aug 01, 2009 4:54 pm

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
hu8tala
 
Posts: 3
Joined: Sun Sep 28, 2008 10:06 pm
Cancer Diagnosis: ACC Thoracic
Relationship To Patient: Self

Re: Utah Adenoid Cystic Carcinoma

Postby Tanya99 » Sun Aug 02, 2009 5:33 am

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?
Tanya99
Active Member
Active Member
 
Posts: 47
Joined: Sun May 20, 2007 11:51 am
Cancer Diagnosis: Adeniod Cystic Carcinoma
Relationship To Patient: Self


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