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Joined: Nov 2014
Posts: 10
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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
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Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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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 lesions

Hope your day gets better!!! Best wishes!


Christine
SCC 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 smile
Joined: Nov 2014
Posts: 10
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OP Offline
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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
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Joined: Jul 2012
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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-overview

https://clinicaltrials.gov/ct2/results?term=Chemoprevention+oral+leukoplakia&Search=Search

https://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
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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
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
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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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