I've been lurking on this forum for years ever since I was first diagnosed with oral cancer five years ago. It started as dysplasia on the bottom right side of my tongue and went down hill from there..

I'm 58 years old so this started when I was 53. I have not smoked since my 20's but I did smoke a pack a day back then. I'm a occasional drinker and may go months without a drinking alcohol. I occasionally smoked a pipe or cigar back when I smoked by no other tobacco products.

So the treatments went like this:
1. Sore under tongue does not go away for six months. I would get them in the past and they would eventually go away. This one didn't.
2. Dentist refers me to an oral surgeon who performs a biopsy on the sore. Diagnosis: Displasia.
3. Oral Surgeon burns sore off with laser. Does not heal and a lesion forms around the site which he biopsy's again. Diagnosis: Cancer.
4. I go to an ENT Otolaryngologist who performs an operation to remove the site. Two weeks later, he goes back in to increase the margins. This time they are clean. So they tell me it's stage 1 (T1NXMX)
5. I get checked every month for a year then go to two months. I also change doctors. After about two years, a new sore appears. My doctor chooses to remove it. Into surgery I go again (third time). Diagnosis: Stage 1 cancer (first reassurance). Clean margins. A later PET show nothing has spread so still T1NXMX.
6. I now back to monthly exams. After a year, I still have white patches around the operation site. They do a biopsy and it's not cancer. Diagnosis: Leukoplakia
6. The site of the biopsy does not heal and get worse over time. Another biopsy is done. Diagnosis: Cancer.
7. Into surgery I go again. New doctor who is a bit more aggressive. He have the area removed tested before they end the operation to make sure the margins are good. Final Diagnosis: Stage 1 cancer third recurrence(T1NXMX).

So here I am. Two recurrences at the same site all state 1. Each time i loose more tongue. My last operation was three weeks ago and I'm healing well enough. However, the white patches are still over the operation site.

So what does this mean? Why three time? Each time it's stage 1 but I'm afraid that something else is going on. My mother, who is 85, has battled cancer in several different forms since her 40's. She's doing great. But she's never had a recurrence in the same spot.

Everyone I talk to looks at this as being very unusual. My teeth don't rum the sides of my tongue, more so now since a section was removed. We are avoiding radiation because of the side affects.

I just don't know what this all means and I'm tired of seeing doctors with puzzled looks on their face. I was hoping that someone here would know.

Thanks for your help.

Rich
Toano, VA