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#118700 06-29-2010 09:47 AM
Joined: Jun 2010
Posts: 6
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Joined: Jun 2010
Posts: 6
Hello,
I hope it is ok to jump right into things, but I would like some advice from you guys. I am an otherwise healthy 28 year old male that has recurrent oral dysplasia. Never smoked,never a heavy drinker and no I have never partaken in the betel nut. I have had 8 biopsies that have run the gambit from mild dysplasia to a recent partial glossectomy with several severe dysplastic spot. I have been going to a head and neck cancer center for the past 4 years. While I am thankful that it has never turned to Stage 1 or worse, I would also like to explore other treatment other than getting my tongue cut on every 3-6 months. I am looking for recommendations for centers of excellence that might specialize in precancerous lesions and prevention.

Thanks for any help you can give.

checkengine #118708 06-29-2010 11:09 AM
Joined: May 2006
Posts: 720
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Have you looked into clinical trials? If you go to www.clinicaltrials.gov and use "precancerous mouth lesions" as your search term, you'll find a number that are recruiting, in various locations across the country. You have to scroll down into each study to find the locations -- a study may be sponsored by, say, M.D. Anderson, but patients might be recruited for that study through other medical centers as well as through MDA.

The National Institutes of Health, just outside Washington, DC, does clinical trials -- and depending on the trial, travel costs and/or accommodations could be covered. You could get in touch with LindaNIH, a research nurse at NIH who was recruiting OCFers for a dry-mouth study a few months back -- her contact info is in her profile.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
Leslie B #118874 07-01-2010 09:00 PM
Joined: Sep 2009
Posts: 229
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Joined: Sep 2009
Posts: 229
Welcome to OCF!


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old

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