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#183146 07-06-2014 10:22 AM
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Hello all. I'm new to this board. 32 year old female, history of smoking, casual drinker. About three months ago, my throat started hurting all the time. Approximately 6 weeks ago, I noticed bilateral eroded ulcers on my cheeks and red spots all over the roof of my mouth. My doctor tried antibacterial and anti fungal meds to no avail. I went to a dentist who thought it was likely erosive lichen planus and referred me to an oral surgeon. The surgeon said he was certain it was lichen planus, and almost didn't do a biopsy. He changed his mind and did a biopsy on my larger ulcer. He said to make an appt for recheck and biopsy results in two weeks.

I received a call from him yesterday at almost 7 pm on a Saturday of a holiday weekend. He said my biopsy was "interesting." He hadn't spoken to the pathologist yet to see what they think it is, but he didn't think it was lichen planus. He said there was massive hyperkeratosis, candidiasis, and something else I cannot remember. He said the interesting part was the candidiasis, because I was already on antifungal meds and there wasn't really any sign of fungus on examination. Now I have to wait three more days to go back and see him to get the official biopsy results and possibly take more biopsies.

My question is... What the heck could this be? I am so scared and all this waiting is driving me crazy. My surgeon said not to lose sleep over it yet, but it is super scary to be called at night, on a holiday weekend. Thanks in advance!

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There are many different issues that can be going on in your mouth. A doctor can only give an educated guess without doing a biopsy. Trying to treat their "guess" isnt the best way to go about this.

First... if you have not yet quit smoking do so immediately. There are many known cancer causing ingredients in all forms of tobacco so you never know what could be causing irritation. Eliminate tobacco for good!

I recommend seeking out an ENT who specializes in oral cancer. They are most likely to have the necessary experience to properly diagnose you. The rule goes like this... If you have an unknown sore or irritation in your mouth for more than 2 or 3 weeks and it does not resolve itself then seek out an experienced professional (ENT). Honestly, I would not put myself in the hands of a doctor who was playing guessing games with a diagnosis, find an ENT who's specialty is oral cancer. Im NOT saying thats what I think it is, its not possible to diagnose someone over the computer. What I do know is a qualified ENT would be the best source for you to get diagnosed with whatever you have going on.

Its likely to be a few weeks before you get an exact diagnosis. Plus by seeing an oral surgeon, they most likely will advise surgery just like any specialist will advise their own line of treatment. Thrush is nothing serious and usually is a thick white coating in your mouth not like what you described.

Hope its nothing serious! 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
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Posts: 8,311
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I'm also confused. If he had the biopsy back then it would have been accompanied by the path's report which would/should have explained itself so who is he trying to impress with his uncertainty and why would he call you on a weekend to tell you he was uncertain?

Obviously you need to see him to get the results but regardless of what he says I would want another opinion, good or bad and then take it from there until you are satisfied. I saw 5 cancer docs before I was satisfied and if I had stopped after docs 1, 2 or 3 I would be dead today.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Yes, that's what confused me, too. He asked if I still had the antifungal mouth rinse at home and told me to take it again for the next few days before I see him because he wanted to see if it made any difference.

He had the report in front of him, but it sounded as if he either didn't want to tell me the exact diagnosis over the phone, or they really didn't have one yet. He said he needs to discuss more with the pathologist and we would discuss it all on Tuesday.

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Well I had my appointment today. I guess I'm quite surprised with the result. I was REALLY still thinking the whole thing was lichen planus, like originally anticipated. But it isn't. It's still unclear, I guess, what it "really" is.

So the "official" diagnosis (for the next two weeks at least) is
leukoplakia with epithelial dysplasia and candidiasis.

I'm not sure what my dysplasia is graded, but it sounded from the talk with the surgeon like it was moderate. It was kind of implied that candidiasis is often only seen in immunocompromised patients, which I am not, and I think that is sort of throwing them off in terms of where to go from here.

As a team (there are three doctors involved with my study), they decided to try two weeks of anti-fungal therapy, and if that doesn't completely heal all lesions, they will be re-biopsy what sounds like more areas of concern throughout my mouth.

Anyway. That's my update. I really didn't want to hear dysplasia :-(

Side note - I am not a current smoker. I was a naughty little girl that started smoking as a teen and smoked for many many years, quitting and starting up about 4-5 times. But no more.

Last edited by waitingimpatiently; 07-08-2014 08:28 PM.
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Glad to hear you do not have oral cancer!!!! Congrats!!!! Thrush can be found in anyone. Many times the patient has a compromised immune system, for oral cancer patients its very common. This leads me to think they dont treat many OC patients which means you have the wrong doctor.

As my in previous post, I suggest going to an ENT who specializes in oral cancer. They are more geared towards treating these types of things. Oral surgeons sometimes are specialists of treating wisdom teeth and TMJ.

Dysplasia is a "pre-cancer". Not everyone who gets it will have it turn into OC but many do. As far as smoking goes... NEVER EVER AGAIN!!!! You do not want to help this progress!!!! You cant risk even one here or there. I had the same habit, I smoked for 28 years. Thats why Im now disfigured and have many physical issues for the rest of my life. Please dont let the same thing happen to you!

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: Jun 2014
Posts: 56
"OCF across the pond"
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Please, please take heed of my story.

I had leukoplakia for 15 years, THEN it turned into a VERY aggressive cancer last year.

Nobody told me that smoking caused oral cancer, I "estimated" my chances of getting it as very low, and nobody told me that leukoplakia increases your risk of mouth cancer drastically!

So I carried on smoking for another 5 years.

I will always believe that, had I stopped smoking straight away, I may not have developed this dreadful, destructive illness.

I am very happy you don't have cancer now, but oh please, please never smoke again.

Giving up was very hard, but NOT as hard as cancer.

Sending you love x x x


Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
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Thanks for the support, friends. I truly appreciate it. You have all been through so much and for that I am truly heartbroken. Your advice really does benefit all of us.

I am currently on day 6 of anti-fungal meds (four days of liquids and two days of lozenges x5per day)to see if it takes care of the white part of my lesions and ulcerations. So far no change :-( I was hoping to see some form of improvement by now. The area where my biopsy was performed has already seemed to "grow back" to the red and white lesion it once was, although the ulceration is a much lesser degree than it was before he cut it out.

I have an appointment with the surgeon in 12 days to possibly perform more biopsies, and an appointment with oral medicine (I'm still not sure of their specialty, though - it seems they specialize in all oral, systemic, and cancerous diseases which manifest in the oral cavity, but I could be wrong...), but that appointment is not until September. Does anyone know if Oral Medicine is the right place for me or is ENT really the only correct specialty? I will discuss with my oral surgeon at my next appointment, but I know you are all very wise in the choice of medical care. I do not know the difference between oral medicine and ENT, and cannot find a satisfying answer in a google search... Thanks in advance!

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You need an ENT! Its an Ear, Nose and Throat specialist. As Ive stated twice previously, find one who specializes in oral cancer. An oral surgeon cuts... "surgeon". They do wisdom teeth, TMJ etc, not usually oral cancer. Dont let them go on a fishing expedition taking samples to biopsy when they are arent capable of treating you even if they would find something. Go directly to a qualified ENT and get taken care of by the right professional.

Good luck!


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: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Waiting... Where do you live? In North America and oral surgeon is not the same as an ENT so if you are I canada or the US you need to see an ENT immediately. Oral surgeons can operate etc... But they are NOT oral cancer experts perse, the best person to see is a specialist - ENT - who deals specifically with oral cancer. In some other countries the oral surgeon discipline is different and they are recognized as a full fledged doctor of medicine not just dentistry - here in canada they can remove the tumor but the follow up - which should include a neck dissection for non HPV cancers etc... Is not something that they can perform. Hugs!!

Last edited by Cheryld; 07-11-2014 08:57 AM.

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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