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.