For any professionals who see this, I am looking for some advice on my most recent diagnosis. I am a mid-fifties caucasion male who first noticed a small white lesion (about the size of a pencil eraser) underneath the left margin of my tongue in 2002. Having been a moderate drinker for 35 years and a recreational smoker, (including a 3 year stint of occaisional cigar use leading up to the 2002 diagnosis), I knew enough to get it checked out. My dentist thought it was nothing but sent me to an Oral Surgeon to ease my mind. The surgeon also thought it was no cause for concern, but agreed to biopsy it to ease my mind. The biopsy showed dysplastic cells with clean margins. My surgeon advised that we just keep an eye on it and do nothing further. A white spot returned in several months and was removed by laser surgery at our local hospital by the same Oral Surgeon. Probably a year later, in June of "05, the spot returned and was again biopsied with the same diagnosis. I never really altered my lifestyle habits during this time either. Within a year of the first tongue biopsy, in Jan. '03, I also had an episode that led to an Endoscopic biopsy of my esophagus that also found dysplastic cells and was diagnosed as "Barrett's Esophagus". Treatment for the "Barrett's" has included a daily Nexium, reduction in acidic foods, elevating the head of my bed, etc.
Now the tongue spot returned about 6 weeks ago and became larger than before, maybe the size of a dime. The same surgeon did incisional biopsy again, this time taking a much larger, deeper sample in an attempt to get all the questionalble cells. The biopsy report came back today and once again indicated dysplasia with mild dysplastic changes in the lateral margins of the sample.
My question is: what should I do next? I am becoming uncomfortable with biopsy's and then a "wait and see" approach. Even though I don't yet have a cancer diagnosis, I want to know what I might do to try and prevent this from becoming cancer. Any thoughts or recommendations will be appreciated.

Dear Lee , I don`t want to sound facetious but, quit smoking is the first thing that comes to mind.
I think you have spent a quite few years dodging the bullet, you are concerned enough to log in to this forum , be concerned enought to quit.
Maybe you already have, if that`s the case , congratulations!
Marica

Lee,

You may want to consider seeking a second opinion from and ENT doctor at a large cancer treatment center. You could bring you medical records from the oral surgeon and the slides from the previous biopsies from the ENT to review. The ENT could also advice you on follow up exams and precautions to take for the future.

That sounds like good advice. Thanks. Between Duke, Wake Forest and the UNC Med School, does anyone have a recommendation on which one has the best department for Oral Cancer?

Duke University is the only one you listed that has a head and neck cancer program. That being said, they are an NCI-CCC program, and one of the best in the country. Given the choices listed, I would go to Duke and now before any more surgery. I am one of the few too with surgery only treatment that has been successful thus far, 3 year check is in April. Best to you.

Sincerely,
Lisa

Lee,
you needs consult an specialist in oral pathology, in some circustances leucoplakias (dysplasic white injuries) appears in the oral mucosa virtue of the galvanic chain propitiated by used metals diferntes for dental restorations. You must stop to smoke and to observe of close the evolution to the injury together with your Doctor

Lee
What grade is your dysplasia?, my understanding is that mild dysplasia will respond to laser surgery and "watch and wait" but severe dysplasia needs aggressive treatment. Me I stopped smoking 8 years ago, so I know how hard it is..
Sunshine...love and hugs
Helen

Helen, I don't remember the terminology that was used previously, but the grade of the dysplasia has varied from mild to more advanced.

Lee
When you go back ask for the histology report, you may not understand it but bring it here and we will help you to sort it out..
Sunshine.. love and hugs
Helen

Lee,
takes care with the laser surgery, in this type of procedure the surgycal margins can not be examined because they were lost during the surgery (pulverized). In my opinion the conventional surgery is more adjusted because you can see margins after, as it was said by Helem the degree of dysplasia is too important and will dictate the treatment.Another important point is determine a posible origin for your Leucoplakia,i

Lee, I'm not a Doc, but your situation sounds a lot like mine was. In 1990 I had a eraser-sized lesion removed from under my tongue with a biopsy of dysplasia. The lesion, and subsequent lesions, were right in the area where I had once held cigarettes and pipestem.

I had smoked for eight years but had quit in 1970 and was drinking lots of beer and wine (lived in Germany from 1986-1992).

Over the next 15 years and a number of oral surgeons, I had a pattern of lesions developing with same biopsy. I reduced alcohol intake to almost nothing in 1994 after starting a course of antidepressants (Prozac) and fully quit in 1996.

The new lesions were always on the edge of the remaining skin and the area removed was starting to irritate, so my ENT prescribed a steriod rinse which I used for several weeks -- Shortly thereafter, a different lesion emerged in the center of the stripped area -- I wasn't concened at first, wanting to believe it was only a sort of callous, but finally when it doubled in size in two weeks I went to the ENT.

The tumor did not look like the previous white lesions, growing out to look more like a flat mushroom and tan in color (could be coffee stains). I can send photos if you want.

Turned out to be an agressive SCC T1-2 tumor with no spread yet to lymph or blood systems yet, but clearly getting ready to spread. My ENT was quite surprised to see tumor after 1.5 decades of nothing significant.

It's gone now, along with more of my tongue (some friends say I should likely have a little less tongue <grinz>) and I am 30/37ths finished with radiation therapy.

So, my advice to you based purely on my own experience is:

1. Quit smoking
2. Quit drinking
3. Examine often and treat anything different as a serious problem in need of immediate resolution.

Pete