Hi,

I have been registered for awhile but didn't really feel that I needed a support group until now.

In Oct. 2005 my dentist noticed a spot on my tongue and told me, if it didn't go away, I should have a biopsy. He meant if it didn't go away in two weeks but I let it go. Back at the dentist May 2007 he absolutely insisted that I go for a biopsy but reassured me that I did not fit the profile for oral cancer. I eventually made an appointment at the office of a recommended local ENT for biopsy in Nov. 2006, still absolutely positive that I couldn't have oral cancer. We call that ENT The Wizard because it was so hard to get to see him.

My biopsy was done by a PA who worked in the ENT's office and it was a horrible and painful experience. A week later I went back for the results and talked to a different PA who told me it was only dysplasia but the ENT wanted to remove 1/4 of my tongue anyway and then he told me every possible horrible complication that could occur and every frightening, barbaric thing that the doctor might even possibly conceive of doing. The ENT dropped in for a minute right at the end to introduce himself and to let me know that getting a second opinon would be stupid. I left the office totally in shock.

The next week I made an appointment for a second opinion. The second opinion wasn't much different from the first but the second ENT was less frightening. So the second ENT removed the tip and whole left edge of my tongue which turned out to be positive for SCC but he got clear margins. I had three very small painful sores on the underside of my tongue and the floor of my mouth that he planned to remove at a later date. A PET/CT scan on Mar. 6, 2007, showed only hot spots caused by calcium deposits unrelated to the cancer. Within two weeks the smaller sores suddenly became much larger and I was scheduled for surgery to remove them Mar. 2007. They were SCC. I was able to swallow a bit of water immediately and to talk within two weeks after each surgery but I lost 30 pounds while my tongue healed. A PET/CT scan July 2007 showed nothing new. My ENT retired and told me not to worry. He reassured me that if my cancer came back in 5 or 10 years there would be bright young doctors and new technology.

Not even a year later we found a new sore on the left side of my mouth at the interesection of my tongue and gums. It did not show up on a May 9, 2008, PET/CT scan but the biopsy was positive for SCC. Surgery to remove the sore on May 23 ended without getting clear margins. The ENT says that the next step is to pull the teeth on the lower left, remove more tissue and do a biopsy on the mandible. Now I am absolutely terrified.