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!

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!!!

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.

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.

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.

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!!!

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

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!

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!

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!!

Hi friends. I thought I would post an update. Sorry it's so terribly long, I will sum it up as best as possible and will still miss details, I'm sure.

I went to my appointment with the oral surgeon a few weeks ago and told him I believe that an ENT would be more appropriate for me than the oral medicine specialist. He agreed that an ENT would benefit me (especially with the palpable posterior lymph nodes I discovered on my neck and constant throat pain), but also was adamant that I keep my appointment with the oral medicine department at the University. Apparently the oral medicine unit (which I had never heard of) consists of a multidisciplinary faculty of doctors from many specialties, including ENT, systemic diseases (autoimmune etc.) that will all be working with me to uncover the underlying causes of my issues. I agreed to keep that appointment and also see an ENT.

In the meantime, my throat continued to be sore, but my mouth ulcers were healing with extensive oral candidiasis lozenge treatment. I saw the ENT this past Monday. I was so unimpressed. He checked my lymph nodes and told me that my neck is just skinny, and that's why I have lumps. He also "informed" me that my mouth was fine, and I just bite my cheeks. I was almost in tears just three minutes into the appointment because he was so cold. He then did a nasal scope thing, which took about one minute. He took it out and said that I have vocal chord nodules (I'm a singer) and that I needed to see an GI doctor "like yesterday." He said don't wait until tomorrow to make an appointment with GI, and sent me on my way. He didn't even give me a real report of his findings. I cried the whole way home.

Later that night I started getting that lump in my throat/chest feeling (I have GERD something fierce from past surgical complications - I had had an issue like this in the past, but it healed with Carafate treatment before they could get me in for the endoscopy, therefore they just "assumed" it was a bout of esophagitis). Everything I ate on Tuesday was so painful going down my esophagus that I just couldn't stand eating, and even vomited my dinner, so that was the last time I ate. By Wednesday afternoon (yesterday), I had a low-grade fever, my neck was stiff, and my referred ear pain was at its worst. I called the triage nurse at the ENT clinic and she sent me to the ER.

Of course the ER couldn't do much, but the doctor was fabulous. She ordered a CT of my neck to see if there were any obvious signs of structural changes or tumors (thankfully there were none). She also pulled up my chart and gave me a full report from the ENT. It said I have laryngopharyngeal reflux and that what the ENT could see of my esophagus, it was pretty eroded and ulcerated. They assume that the candidiasis and dysplasia has spread down my esophagus and is causing the severe pain. In the meantime, I am to stick to a clear liquid diet until I can be seen by the GI.

GI got me in for a "consult" in a week. They called and tried to reschedule me with an esophageal disorder/cancer specialist, because my GI provider thought that would be best given the results from my ENT, but that appointment would have to wait until the end of August. I said no way can I wait that long, so I kept the first appointment as well. The ER doctor said to make sure I took every first appointment available from here on out and not to let anyone make we wait.

Anyway - that's where I am now. I really feel there is something systemically wrong with me. A few weeks ago, I had a recheck on my iron levels with my PCP, and my WBC were at a 4. Since November, the levels have dropped from my normal 8, down to a 5.9 in March to a 5 in May and now a 4 in July. My body is getting tired. And I'm 32 years old and chasing two toddlers... I wish I would stop getting pawned off on other specialty doctors :-(

I'm sorry for my negativity in this post. Most of you have been through so very much worse, and I really have no right to complain. I just find comfort in posting my thoughts on here, so I do thank you for all your wisdom and insight.

Keep us posted.

It sounds like you have things moving forward. I wouldn't worry as much about the doctor's personality traits at this point. You want ones with a lot of education and intelligence.

Warning. Long term gastric reflux is a lead up to esophageal cancer. Ideally LIMIT whatever you take in that's acidic. My father in law like his wine and had a long term history if gastric reflux. He was dx'd in sept. With esophageal cancer. I am not sure what your eating habits are, but minimize the acid, and eat smaller frequent meals daily, plus take a reflux med if you can. Still hoping its nothing. Hugs

I have severe GERD due to complications of a gastric leak I suffered after bariatric surgery. I had a stent placed in my lower esophageal sphincter for 6 weeks to allow the leak to heal. I nearly died. This was 2 years ago. I was told I would have problems with reflux and have been on high dose of PPI therapy since then. I eat very little, and even less now that It's so sore to eat.

I went for my first visit with the GI doc, who was sadly of no help. She just said I need to keep my appointment, you guessed it, another doctor. One that specializes in esophageal disorders and cancers. She claims that this group of doctors has reviewed my case and is ready to take it on. Everyone just keeps telling me that I'm such a "unique" case because of my previous post op history, and I'm starting to feel like nobody will help because of it. Now I wait until the 19th to have a consult with this group.

My ENT wasn't worried about my palpable posterior cervical lymph nodes, but I am a sonographer and went ahead and put a probe to my neck to see for myself. I now know that I have multiple 1.5-2.75cm lymph nodes. And those are not normal sizes. They could just be reactive to what ever is going on, but who knows, it could mean much more. There's just so much. Blah. Waiting waiting.

Hope all of you are well as can be.