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| | Joined: Apr 2015 Posts: 3 Member | OP  Member
Joined: Apr 2015 Posts: 3 | I have had approximately 30 surgeries to keep high risk oral pre-cancerous lesions from turning cancerous. My tongue is seriously being whittled away. The lesions grow on the right side of the tongue - side, floor of mouth, gum - from the way back to the tip. Lost about 1/3 of tongue at tip and tethered down at back. The most recent surgeries have been 2/18/15 and 12/10/14. There appears to be no end and no treatment other than surgery. Since I don't exactly fit the profile of a person with oral cancer, I am ineligible for similar treatment options. Does anyone have any recommendations?
Rhoda~
chronic oral leukoplakia
squamous cell dysplasia
p16+
HPV16 negative
innumerable surgeries, 40 years
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | I would suggest going for a second opinion at a top ENT, preferably one who practices at a CCC.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Apr 2015 Posts: 3 Member | | OP Member
Joined: Apr 2015 Posts: 3 | Thanks Christine. Pretty much exhausted NY hospitals - Sloan, NYU, Beth Israel, Columbia Presbyterian,Lennox Hill, North Shore/LIJ. Spoke with Mayo & Dana Farber. Will follow up on your suggestion. You seem to be a wealth of information. I thank you and hope you are doing well at this point in time.
Best,
Rhoda
Rhoda~
chronic oral leukoplakia
squamous cell dysplasia
p16+
HPV16 negative
innumerable surgeries, 40 years
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