| |
| | Joined: Apr 2015 Posts: 3 Member | | 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: 8 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: 8 | 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 | | 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
| | |
| Forums23 Topics18,286 Posts197,241 Members13,440 | | Most Online2,386
Nov 19th, 2025 | | |
This is another custom island. This one could be used for ads. This spot is one of the best places for ads on your site to be placed. This can be enabled/disabled on a per forum basis.
| | |
|
| |
