| Joined: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | Hi, On June 4th. my ENT removed a 4th leukoplakia. I developed a large ulcer in my mouth which has since healed but left a dent... The excision site hasn't yet completely healed and is now raised and the skin behind this area is starting to look leukoplakia white. My dentist advised me to go back into the ENT. So I'm waiting for apts. I try very hard to be grateful and remember that in the bigger picture my situation is minor (as in it is pre cancer but not cancer as of yet...) but I still find myself disturbed today. It seems to be getting worse every time. I'm eating great and getting lots of exercise and doing what I am supposed to. I'm just upset and discouraged today. | | | | 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 | Im very sorry you are upset. I imagine it must be very difficult going thru this over and over. Have you considered seeking out another ENT for a second opinion. As a 3 time oral cancer survivor, I see your situation as both very frustrating for you and also as extremely fortunate. From what I understand about leukoplakia, it is not cancer or even a pre-cancer and often may never turn into cancer. Unfortunately, this frequently will come back after its been removed. Eating right and exercising is great but it may not have any effect on why the leukoplakia returns. Im posting a link for more info about this. Leukoplakia and other premalignant lesionsHope your day gets better!!! Best wishes! 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: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | Hi, Thanks! I try very hard to focus on how fortunate I am. Sometimes I need a reminder. It is appreciated! So far it's been no fun but nothing too serious. They have, in the past, found cells suggesting carcinoma... I am waiting for an apt. with a different oral surgeon. And I'm going to see both the radiation specialist and my ENT. Thanks for the link...I will read up! Thank you again! Rachelle | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | In addition to seeing an ENT, maybe look into Chemoprevention strategies for Head and Neck Cancer, clinical trials, Photodynamic Therapy, since these keep returning. Here is an article explaining some you can further research, ascertain any current or new applications, and discuss with your doctor(s). http://emedicine.medscape.com/article/855712-overviewhttps://clinicaltrials.gov/ct2/results?term=Chemoprevention+oral+leukoplakia&Search=Searchhttps://clinicaltrials.gov/ct2/results?term=Chemoprevention+oral+cancer&Search=Search
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | I wanted to say thanks for all of the assistance. It turned out that the last biopsy showed micro invasive squamous cell carcinoma BUT the margins were clear. The bulging skin in the healing area is proud flesh and we are dealing with it. So everything is okay but I will be watched carefully. My naturopath is looking into what further we can do since my ENT does not want to chase mild dysplasia.... So all that can be done has been for now....Thank you for listening again! | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Lady that's great - keep a close eye on your neck even micro invasive SCC can be aggressive and seed to the nodes. So any sign of neck lumps high tail it back to the dr. Immediately. Hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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