Hi and welcome with sadness.

I went to my dentist for cleaning and showed him the small spot under my tongue. He made an appointment for that afternoon with an OS who did an excisional biopsy of the tumor. I then looked for a nearby CCC (the closest-40 miles away) and it took three weeks to get an appointment with an ENT. It seems that at this CCC they have one doctor that handles OC cases.

After waiting for the appointment, that ENT said "watchful waiting" was my choice. He did not want to do surgery for clear margins after I had already had a biopsy done with the OS (I felt like he considered that janitorial work; cleaning up after someone else). I wish I had shopped around at other CCCs further away and gotten a quicker appointment, and I wish I had skipped the OS.

I finally made an appointment with an ENT at Johns Hopkins (130 miles away) for a second opinion. He has clinic hours on Wed. and Thurs. and I saw him the first clinic day after I had called him. Unfortunately, that was three months after I saw the OS, so he agreed with the first ENT that "watchful waiting" was appropriate at this point due to the delay.

I asked the Hopkins ENT what he would have done if it were he who had done the original biopsy, or had seen me soon after the biopsy. He said he would have immediately scheduled a surgery that would include frozen sections being taken during the surgery and tissue removal in the area of the original tumor until clear (1cm diameter at least) margins were obtained. He would have also made permanent slides to be examined later to make sure they did not miss anything.

If I had know then what I know now about recurrence (often a result of cells missed from the first primary, not an unrelated new second primary), I would have contacted the Hopkins ENT immediately after Dx in 09/2008 and made an appointment which would have occurred within days. Once you are a patient of this ENT, your care is his responsibility and things move quickly.

My first ENT did say at my last appointment (June 8) that my tumor was very close to an SCC in situ. I think he feels safe to say that now that it has been 9 months since the excisional biopsy.

I am now in a "treatment" situation similar to Leslie's husband.

My advice (with my limited knowledge) would be to investigate CCCs in your area and get an appointment with an ENT ASAP. I agree with Gary, skip the OS. I asked my Hopkins ENT about the Velscope, and he said he had little faith in it and did not recommend it as a part of my surveillance (readings depend on the skill of the operator, and he felt there are too many false positives).

I wish you the best and hope your "suspicious oral growth" is not cancer! Please let everyone know what you find out.

P.S. I want to "justb" too!