Hi everyone. Recently received biopsy results on left lateral undersurface of tongue. I have an area of leukoplkia which was biopsied. I have a previous diagnosis of hpv on tongue 3 years ago one dr wanted to remove it and on e didnt. Now current results of biopsy are keratinizing severe dysplasis with foci of micoinvasive carcinoma. Very confused and upset. Scheduled to have co2 laser treatment tomorrow to remove area of leukoplakia. I am concerned because there is one small area where there is pain any feedback would be greatly appreciated.
dj8

First of all, what kind of doctor is treating you. Someone that is an oncologist? Your most recent diagnosis says that you have a very early cancer starting. Not some precancerous change (which is what the rest of the surrounding dysplasia is, and as severe will eventually become one), a cancer. Your first diagnosis, makes no sense at all, since a biopsy would go to a pathology lab, and they would determine that is was something specific, like the finding that it was dysplasia, it was hyperplasia, something specific, but HPV is not one of the choices. That would require a secondary testing of the sample by a different kind of lab (the first one was a histopathology lab) that had PCR or in situ hybridization techniques to determine that specific cells had HPV dna in them, and if they did, what strain of HPV it is�. most are not cancer causing.

So a little more information would be helpful. But removal of something with a laser, while it might be OK in a VERY SMALL carcinoma in situ which is where this is headed, leaves out lots of other things I would want to know. It also does not leave anything behind after the procedure since the tissue is vaporized and the removed part cannot be analyzed further . ( An excised portion would have some of the deeper cells and it might be nice to know that those were not involved.) Did they scan you to determine this is all that is going on? Is all this being done in a dental office by chance? Give us a bit more information to work with and perhaps someone here can give you something more specific as an answer.

Ultimately it sound like you should be seeing an oncologist at a cancer hospital. Good luck.

The hpv was diagnosed on side of tongue 3 years age just from their seeing it all along the side of my tongue. I have had hpv growths in other places. Currently who is doing the procedure is an ent. He said that witha the co2 laser they are able to get sections of the tissue to analyze. Dr, First thought it was lichen planus since it was such a small area that was causing pain. The biopsy showed that the cells in the own area are right around the line which crosses over into the microinvasive carcinoma. Would it have been better preventative if they took the hpv off 3 years ago? They have not tested me for hpv to see what type I have. You are recommending a scan what type? Is there any other treatment I should get. Since I got the pain I have not been feeling well but I also have a severe anxiety disorder. What are your recommendations and what do you think my prognosis would be. What should I do to improve that. Can cancer be in my system now even at the microinvasicve level? How do I determine this I was asking for bloodwork etc Thanks

First of all get yourself to a Cancer Center in your area. Do NOT mess around with this it's fast growing. HPV was diagnosed just from seeing it and they didn't test to see what type you have, if I read that correctly? Hmmm...I would get to a Cancer Center immediately and not deal with the ENT. You can call a Cancer Center and make an appointment yourself, no referral needed. Take all your reports with you plus the disk and they'll read them. This is nothing to sit on.

Someone here will provide a link to the Cancer Center's in your area,I don't know how to do it.

Take care
Connie

I will make an appt at a cancer center. But taking taking bad cells off is a good idea I think. What symptoms do people experience if cancer does start to leave the local area of tongue and go start to go to different places?

Most cancer patients will not know if their cancer has spread. HPV isnt something that you can look at and tell its there. Only thru a test would it be determined that you have it. It sounds like there is alot of confusion as to whats going on. Make an appointment with a cancer center and start from square one. Let a whole team of specialists evaluate you and determine whats happening. Im sure you will be able to get into a top center in the NY area.

http://health.usnews.com/best-hospitals/rankings/cancer

It's hard for those of us here to really give you advice on this. Many ENT's are head and neck surgeons that see oral caners routinely. I think what bothers me is that your first go around with this, someone "looked" at your tongue and told you it was HPV. I don't know how that could be done. LIchen planus is a flat white lesion like leukoplakia, but from a different etiology. HPV is a virus, not something that you could actually see in your mouth. Sometimes people develop little raised areas in their mouth like buds, or flame shaped growths, these can be from an HPV infection. But at the end of the day, you can't know that it is HPV caused without a surgical biopsy because there isn't anything to see related to the virus. You can certainly see the white leucoplakia patches. I'm just not fond of people thinking that they can look at something and tell you what it is, I don't care how experienced they are. Only a pathologist looking at a cell sample under a microscope can tell for sure, anything else is a guess. Did someone do a pathology report on the other growth you had taken off? Not all HPV that cause growths also cause cancer, so I would have bee good to know out of 130+ versions of it, what HPV was involved in those growths if they were actually HPV caused at all.

Anyway, taking it off needs to be done, with the new biopsy report that you have showing that is beyond the dysplasia stage, and a laser for taking of the large portion of the white patch that is only moderately involved is a good way to do that, because the laser can just burn off the superficial cells The area will be sore for a few days but since it is so shallow, there won't be any stitches or anything, it will just heal in by what they call secondary intent.

If this doctor is really experienced in oral cancers, it is certainly not a bad thing to have him remove this. But most of the posters here have not had these very early finds like you have, and most get seen by some kind of tumor board of multidisciplinary doctors. Those cancer center environments have an approach which is more comprehensive, and questions like what is the etiology of this ( my teams epidemiologist was involved) are asked and answered. Without knowing the cause, smoking, virus, or perhaps not knowable, part of the questions for the future go unanswered. There have been posters here that have had multiple small surgeries to remove things like yours, and it just keeps coming back. There surgeons just keep cutting them off, but some eventually progress to an oral cancer that can't be dealt with so easily.

Good luck with the removal today. Since you have now had this go all the way from a pre-cancer, to dysplasia that was high grade, to an actual spot of cancer - you need to be vigilant from now until forever that this isn't happening again, and if it does that you catch it at the earliest possible moment.

Cancer that spreads out of the very local environment most often will go to the lymph nodes of the neck as it spreads. So a painless, firm, fixated hard spot in your neck would be a symptom of it leaving. But a MRI or CT scan of your mouth and neck might catch something like that before you could feel or see it. My guess is your doctor thought this was such an early find that checking that area with a scan was unnecessary.

Brian that is what I was going to say. I'm not all knowing but from what I understand HPV is not " visible " in ones mouth like a sore - at least that's not how it presents. Also there are two parts to the tongue - the oral tongue - which sits inside your mouth, and is visible - and the base of your tongue which you can't see because it runs down the back of your throat. Usually cancer of the oral tongue - which is what you are describing - is NOT HPV related - usually the base of tongue cancer, and some tonsil cancers are. So this HPV diagnosed on your tongue confuses me.
removing what is here is definitely a good thing - especially - if you have the words carcinoma in your results. Even if it is microscopic - it could very well spread quickly. Please go to a comprehensive cancer center. Get a second opinion. Take care

Thanks for your inputs and support I had the removal done todsy they put me out for it and it appears he went as far ss the original biopsy 3 mm down the whole left underside of my tonge. In alot of pain now. Feel lucky it appears to have been caught early. Thisd particular dr is very experienced using a laser he was head ent at duke and Johns Hopkins now has settled in upstate New York. Three years ago the ents two dr's said the saw a large patch of the very flat hpv cells which went the entire length of the left side of my tongue and down into my throat. I also had and endoscopy recently and was diagnosed with eosoniphilic esophagitis. Also had am eosnophil polyp removed a few years ago. Would it have been better for them to remove or test for hpv and then monitor.Three years ago they did not even tell me that hpv could lead to cancer and they did not recommend follow up appts. at the time. Recently my dentist saw the leukoplakia and said I definitely needed biopsy. Seems like there should have been more diligent follow up. Seems like it would have have been better to remove tissue when it became displasic? Not sure on alot of this? Current plan is to follow up with results of tissue in a few weeks. IT will be analyzed by Beth Deacconess hospital in NYC. One thing tthe dr. said is that the line is fine between severe dysplasia and micoinvasive carcinoma. That this imaginary line is used and different pathologists have different definitions. Some actually define micoinvasive cqrcinoma as almost filling of fillin line. Any ideas? Any feedback and advice would be greatly appreciated.

It sounds like you have done what you can at this time until the report comes back on the removed tissue, that give you some idea bout clean margins etc. You can make further decisions then. Even if it is a complete removal, I would still what to have opinions from people outside the surgical world. And don't forget about regular, at minimum every six month, oral screenings by someone that you trust to find these things.

As to what happened in the past, and if that was appropriate, the best that could have been done, etc., that is water under the bridge. You need to understand exactly where things are today, and have a plan to monitor and correct, with people that you trust for years into the future.

Thanks based on what I have told you what stage would I be classified and what is future prognosis if I get checked every three months now is that enough? I am def in alot of pain now. He did go in kind of deep in some spots is there a way to get a scan while I am waiting results. I have felt kind of lethargic lately could this be because my body has been fighting this. Another girl who posted said I wouldnt notice that? I had been drinking alot of caffeine to keep going. should i pursue a scan and what about pursuing radiation or other treatments?

Your Dr. didn't give you any pain meds after surgery?

As far as Radiation or other treatments you have to wait for the results of your biopsy and scans. After my biopsy came back stating SCC I had a PET/CT Scan from my lungs all the way up.

Connie

Staging is done when the tumor is measured and you have had a PET scan. Its not possible to tell over the internet what Stage you were. Many members have advised you to go to a cancer center for a team approach to this. Another excellent place for more care would be an ENT who specializes in oral cancer. I agree with Connie, no pain meds? Mouth pain can be awful, call your doc if you havent gotten any pain meds.

Wishing you a quick recovery!

I did get pain meds norco. I cant anything though and can barely swallow pills. My initial biopsy was diagnosed that I had keratinizing severe dysplasia with micoinvasive carcinoma I was told by dr that this can be misleading cause different pathologists define it differently . He took away all of leukoplkia and other tissue that had dyplasia. what were your feeling and symptoms etc whe you went through this?

I was given liquid pain medication. Never heard of Norco, I don't take pain meds any more.

Seeing you have read what most of us have been through and I wish I had found this forum earlier I would have followed what the people are saying in here. They know what they're talking about. Follow through with a Cancer Center near you seeing you live in NY they have many around the area. I would step on it if I were in your shoes.

We cannot diagnose on here we are all different. I had no cancer cells in my lymphnodes, but someone with the same cancer as me might have.

I go for my CT/Scan in Sept and who knows what that will bring. As you can see when most of us are scheduled for a CT/Scan we get nervous. We might not have any symptoms the CT/Scan will tell.

Call a Cancer Center today and make an appointment it might take a week or so to get in. I would do it to get another opinion this is your life!!!!! Take all your records with you don't think your going to hurt your Dr.'s feelings....this is your LIFE!!!!

Take care,
Connie

Hey sorry you're in pain... Your meds should make it easier to eat - if not try a protien shake ir two... Try to make it room temperature. It will fill you up and help you heal. Try to avoid sugar... Not good for you - make the shake fresh. You can toss in fruit juces and milk or soy milk. Fresh fruit and protein powder. Good luck and please - I know you're not necessarily close to a cancer center but go for a second opinion. The usual treatment for tongue cancer : biopsy, initial diagnosis, MRI, CT, PET scan one or all of the above. I had an MRI and CT canada is not a fan of PET SCANS. surgery - removal of the tumor, and possibly a neck dissection dependent on your dr. and scan results. All tissues are sent for biopsy, results, will determine radiation, and or chemo.
Since you've been diagnosed with microscopic cancer, and it's been removed your results will determine the rest of your care, but a scan is important this cancer can be aggressive, even microscopic... I know people who've had a small tumor, but still had it in their lymph nodes. Good luck!

Hi when you were diagnosed did the biopsy show what what you had right away? Like my biopsy the dr said severe dysplasis with microinvasive carcinoma. He told me that he expected we were getting this in the very early stage. I did have some pain in one small spot where he did the biopsy the biopsy was 3 mm deep and he estimated the dysplasia around 1 mm deep how reliable is the analysis that this is where i am at? Would I then be considered at level 0 what is my prognosis? Is what you are saying nothing is definitive without scan? When you were diagnosed what did your initial biopsy show?

Brian how do I know if dr was able to get a complete removal. Are there any physical symptoms of early oral cancer. How do I know exactly where I am at? On biopsy dr took biopsy 3mm deep and he estmated dysplasia was 3mm deep? How reliable is this? Thanks

If i have severe dysplasis and microinasive carcinoma then do I have a tumor or in the early stages do you not have them?

He should have the removed tissue sent to a pathologist That guy will look at the margins and see that they are all clear or not. He will also confirm that his original findings were/are still correct. That sample has to be kept by law for 7 years. Your doctor should share with you the exact pathology report. In that you will know where you are at right now.

When are margins considered clear? And if they are how often should I follow up? Should I follow up with oncologist or ent. What is the best hospital in the New York area to go for oral cancer sloan-kettering?

In my opinion cancer is cancer - anything size wise that is under 2 cm is considered stage one. 1- 3mm depth isn't huge - but there are people here who have had a 1mm depth, been stage one - and still had one lymph node involved with ECE ( extra capular extension ) which is a little cancer outside the node. This is usually a call for radiation and chemo... Is the small area classified as a tumor? I'm thinking yes. If it has a depth and width - yes... It's a small one but a tumor none the less... And yes I believe a scan is important. If you don't have one - do yourself a favor and keep a close eye on your mouth and neck. I don't want to scare you... But this cancer can be aggressive - so keep an eye on it... Better safe than sorry. My results read much the same way as yours - dysplasia and bits of scc. A fair portion of the underside of my tongue had dyslasia. It was all removed. Clear margins are good -we all hope for them post surgery. The problem with cancer is the margins could be clear - no problem, but there could still be a few cells in a lymph node or elsewhere this is why it is important to keep a close eye on your neck and mouth - and - yes follow up every three months just to be safe. Also apparently Sloan lketterling is one of the best.- Best of luck.

So is it better to go ahead and do some radiation as a precautionary measure. I have heard so many times it doesnt appear to be much and then it takes off.What is the best way to monitor? Frequent scans. Also this early on can it cause any other symptoms I also have an extreme anxiety disorder so I am trying to understand what symptoms of early cancer might be? What was the cause of yours? If it is hpv does that make a difference in treatment.

Spoke with ENT surgeon today and he said everything went well durinf co2 laser proceduree. There was just a very thin white area of leuckoplakia and then he said everything beyond that near the muscle looked normal and the procedure went exactly as he expected. Iam in alot of pain now but he said don't worry if you can only drink fluids for now.

HPV treatment is surgery if possible ( tonsils - and base of tongue ) and usually radiation and chemo. For you I would ask for a scan - if it's clear - then go for you regular check ups, keep an eye out in your mouth for anything unusual - and give your neck a feel - weekly your looking for a lump that isn't normal. Try not to freak out but do have a scan done... Good luck!

Tongue is in extreme pain after co2 laser procedure it has been five days now I am taking norco which is hydrocodone and acetamenaphin. I have also been taking some advil as well and have rinsed my mouth with hydrogen peroxide. Can not eat anything does anyone know how long the pain will last and any ideas to help which I guess is a burn heal faster. It is about 2.5 inches wide and goes down the entire side of my tongue is this a large area or typical?

Yikes- sounds sore... Can I suggest being gentle with your tongue for a bit.. Not sure how or what you are eating but do bland, Luke warm foods or ensure and rinse with salt water and baking soda - not sure if hydrogen peroxide is too harsh. Good luck.

Spoke with ent surgeon today he said that pathologist told him that he felt severe dysplasia and microinvasive carcinoma are the same thing. My surgeon feels that micoinvasive is that. I am confused it appears there are different perspectives out there? The most important thing is that they are treated and that person does well.

definitely... i guess it all boils down to how much you trust your doctor... bottom line if you are willing to accept his explanation then that's great, if not - then get a second opinion... for me the word carcinoma means cancer... not dysplasia... that being the case. i should be handled carefully. Best of luck I know deciding what to do is a difficult decision. Sometimes sitting back and waiting is all you can do, however it bites to find yourself in a position where you are saying... I wish I had done this.... way back when. Take care

From what you have written, it seems like you had a high-grade dysplasia or "Carcinoma In Situ (CIS)" but seems like it has progressed with some invasion of the surrounding tissues.

Technically it is TisN0M0 (Stage 0) and you have been lucky to catch it very early before it could turn invasive and tumorous. Just keep a close watch and stick to the follow up schedule (Next month and then once in three months?). I would suggest to get a PET scan after 6 months just to be sure about Lymph nodes.

You missed by a whisker so take good care.

yes i think the hard thing is defining what is cancer. Is there an objective idea out there? when does dysplasia become cancer. What are the screening tools to identify dysplasia early. It seems not alot of info is out there about screening for dysplasia in the mouth? I feel like this should be part of physical and or dental exam? My dr is good but he said with leukoplakia it is hard to tell and only 4 percent of white lesions turn into cancer?

There is no definitive timeline for dysplasia becoming cancer because lot depend on your immune system and oral hygine. However, dysplasia is early pre-cancerous growth and the risk of cancer is there.

My father's ENT had said that any oral lesions lasting longer than a month, after tobacco cessation, quitting betel chewing, abstinence from alcohol and avoidance of irritants like sharp-teeth and foods items know to cause irritation, are potential threats and better to get them screened.

I would suggest that dj first get a copy of all his records (which include doctor's notes)and if he can't decipher an actual diagnosis for which he's being treated, ASK. If he still doesn't get adequate answers, he always has the option of taking those notes to another doctor in the field for a second opinion.

The medical community is almost in bow-down mode as far as patient rights these days, so no one should be afraid or intimidated by asking for your own records. And it no longer takes weeks; I got mine within 24 hours.

Don't you agree Cheryl?

Received results from the biopsy on the tissue from the left side of my tongue that was removed by the co2 laser. Received a message from dr and he said he had good news for me. Talked with his secretary on the phone. Results were the following mild to moderate dysplasia with an ulcerated squamous spot in the epithelial tissue of the tongue. I will talk with hte dr tomororrow. Sounds like very goood news that tissue is mild to moderate dysplasia? Thanks

for feedback!

Looks all fine!

Just keep a close watch on that tongue. If you see anything suspicious, check with your ENT.

Quit smoking, drinking and maintain oral hygiene. As I said earlier, you missed by a whisker so take good care.

God bless.

Definitely agree... You should be able to get your records immediately an ask questions. Educate yourself, and if you don't get answers get a second opinion. Good luck!

Thanks I will definitely go for regular check ups. I feel lucky that I was able to get this diagnosed so early. The dentist initially saw the leukoplakia and referred me to get biopsy. Then I had an lesion which caused pain. But I must say that I was not educated well about oral cancer. I didnt understand that it could be aggressive so quickly without you knowing. Very scary. They should check my tissue for hpv as causal factor right? And if hpv is determined to be the cause of this is drinking still correlated with causing this or is it just hpv? Is there anything I can do other than 3 month check ups? What should i look for in th future? If it started as leukoplakia this time if something does come back would it typically be the same looking thing or in the same area or could this change?

Look for more irritation, sores that dint heal difficulty swallowing. Etc... If you know for sure you've had HPV that's good, but not necessarily related to oral cancer / leukoplakia. drinking and smoking can cause any irritation to worsen... Thereby it can cause the progression of some cancers. Everything in moderation - good luck!