Story about Adenoid Cystic Carcinoma .

ACC Warrior!

May 21, 2017

By: Jen


Several years back, my dentist noticed a lump on the roof of my mouth. I went to a local ENT doctor to have it checked. He did an exam and eventually only a superficial biopsy of the site (not getting down INTO the lump), and found nothing. 

A couple years later, a new dentist saw it and was immediately concerned. He sent me right away to an oral surgeon who did a scan, which showed something growing, to the point that the palate bone was thinning out. He did a biopsy a few days later, the results of which were inconclusive. He suggested the entire lump be removed, so I went to another ENT, who removed the lump and all surrounding tissue on my left hard palate, all the way down to the bone. A month later (November 2013), I was blindsided with the news that the lump was a tumor of a very rare, incurable cancer. 

December 2013 I lost about a third of my upper left jaw (palate, teeth, bone) and in September 2014 the docs at OHSU spent 11 hours rebuilding my mouth using an 8" section of the outer layer of my radius, a chunk of my flesh, and my entire radial artery... Which they used to rebuild the inch of jaw bone on the left side, close the hole in the roof of my mouth, and the radial artery is tied in with my main facial artery to give it all blood supply. I now have one blood supply to my left hand (no radial pulse anymore), an 8" plate and screws in my radius, and metal straps and screws in my facial bones where they attached the bone graft. 

As of May 2017, I have had clear scans. 

 

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