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#141831 10-21-2011 02:52 PM
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Hi all, I just joined. It's great to know that I'm not alone. In June, I felt something on my upper gum, left side, that I tried to floss away, assuming that it was food. In mid-July, I had my dentist check it out. She said it was a wart and we could remove it at no urgency. I had her remove it in late July. The pathology report came back with severe epithelial dysplasia. I've since had more tissue removed adjacent to it with two more pathology reports, one clear and the other with moderate dysplasia which was regrowth next to the original site. It's likely to be of HPV origin, although it hasn't yet been conclusively determined. My oral surgeon is now beyond his experience and has just referred to a specialist in oral pathology. My appointment is in a month. I now have a mild pain in the adjacent cheek and ear. Has anyone experienced HPV SCC on gingival tissue? How likely could the current pain in my adjacent cheek and ear be associated with the growth on my gum? Is a 4-week wait for a specialist reasonable or too big a risk? The regrowth happened in a month. Margins appear to be clear now and there are no other obvious oral growths. Thanks so much!

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Hi Alcajazz
I don't know the answers to your questions but respond to acknowledge your post and let you know that these are hard questions so it may take awhile for someone who knows what they are talking about to respond.

However, if you want my thoughts on the matter ... I am not seeing anything in your post that suggests you have cancer as dysplasia is not cancer. For this reason, I would think a wait of a month is probably ok? I suspect if your oral surgeon suspected something really nasty and needing urgent attention, he would have pushed for an earlier appointment?

Then there's the lump and subsequent tissue removal that is of HPV origin which I assume is the dentist's take based on what it looks like given this is unconfirmed???. I wonder if the dentist was referring to an actual wart which is certainly caused by HPV but would be one of the benign garden variety types (ie not type 16 or 18 which are the ones that progress to cancer)


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
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Nothing is absolute in cancer. And while this is an unusual anatomical site for HPV+ SSC, it does happen. The giveaway is the exofitic presentation, cauliflower shape, wart like, appearance. I would make sure that not only did I get an opinion from an oral medicine specialist, that I had that removed tissue sent for pathology report and HPV typing.

Good news. Sometimes these that are this shape are benign but still HPV caused, just not the bad HPV16. Having said that, to be having unilateral pain at the same time, I don't care for so much. Perhaps just a coincidence. But this isn't something to wait a month for - get another referral and an answer that is gold standard pathology with HPV typing done at least by PCR testing or insitu hybridization. The pathologist will know where to get that done. If not, the bottom of the HPV page on the main OCF site has the link to mail samples to the highly trusted Johns Hopkins lab for testing for HPV types.

Last edited by Brian Hill; 10-22-2011 02:35 PM. Reason: typos

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Thank you Karen and Brian. Your responses have given me some better direction. Much appreciated! My oral surgeon sent it in for pathology and the first report indicated severe dysplasia described as 'a papillary lesion consisting of markedly hyperkeratotic stratified squamous epithelium arranged in villi with delicate fibrovascular stroma with 'perinuclear halos and shrinkage to form koilocytes consistent with viral cytopathic effect with hyperchromatism, increased N/C ratio, variation in morphology of the rete ridges and extension of the atypical cells to the surface layer'. When I asked my surgeon if we could type the virus, he said that the tissue was likely destroyed during the analysis and that 'the dental lab doesn't have the equipment to type viruses'. I live in a big city (Toronto), so I found that unusual. I certainly can call the pathologist myself and see where that leads. Would a visit to an ENT help now? I had one check me out two months ago after the first tissue removal and all was fine. However, this latest report from the same pathologist says 'the recurrences suggest that this is a form of papillary dysplasia rather than squamous papilloma.' You two - and this great site - are real gems. Thank you! Nick

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Hi I'm from Toronto too - if you do have oral cancer - go to PMH for treatment ! They are awesome! And most importantly get looked at by an ENT... Good luck! smile

Last edited by Cheryld; 10-22-2011 01:30 PM.
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In the US, tissues samples sent to a lab have to be kept on file for a minimum of 7 years by law. Don't know what the rules are in Canada, but it seems unlikely that there isn't some of that still around. To do a histopathology on the tissue, they would not use it all ( since that would eliminate any reference material were there some kind of problem) and the lab likely has some of the tissue left to send to JH for HPV verification and type matching. The cauliflower shape is a dead giveaway that it is HPV, as that is the most common form of papilloma.

It is not expensive to HPV test, and you can request it of the lab yourself ( private pay of about 200.00 US with shipping last time I checked. ) These guys were very thorough on what they did in your report. Of course some of this is to state everything, even the obvious that goes along with a previous observation, because to do less might leave the pathologist in a lawsuit if he dosen't comment of every little, even insignificant detail.

By the by, papillary dysplasia is caused by HPV. Just noticed that last little comment. So now you just want to be sure that it is not type 16, which it probably is not. Then you are out of the woods cancer wise. This thing is probably going to come back over and over again.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Thank you Karen, Cheryl & Brian! I appreciate the insight. I called the pathologist yesterday and unfortunately, he can't advise me so I'll see if I can get the tissue typed another way while I wait for my referral. I'll also try & line up an ENT appt as well. And yes, Cheryl, I agree, PMH is very good. Sunnybrook also has great cancer care, so I feel in good hands once we get in to see a specialist.

You guys are the best! I'll keep you updated as it may help someone else.

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Hi all, it's been a month since my last entry. I've been working my way through our health care system. I've seen an oral pathologist and my dentist and they tell me all looks well in my mouth. No sign of any regrowth. However, I've developed a throbbing, dull pain in my face on my check on the same side of my face. it's slightly swollen. Started at as a tingling & numbness on my cheekbone & upper lip and seems to have migrated to adjacent to my nose. It's been going on for a month. I went to see my GP on Nov. 10th and went to Emerg on Sunday since it was at it's worse then and no one can explain it. The emerg doc prescribed an antibiotic on spec and since they can't feel anything, most seem to think it's of the skin. (I'm getting those looks.) I have a referral to an ENT but it's on Jan. 3rd. Should I be asking for an x-ray or an ultrasound of my face? Could it be related to the warty mass that was removed on my gum? Not sure where to go from here. Thanks so much!

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I would seriously push to get in prior to January. Call the ENT and tell them you will take any cancellation, even if you have to call them daily, if the pain was bad enough to go to the ER it should be looked at. Are any of your nodes swollen... Sometimes that radiates along the jaw and to the ear. It is possible to have something going on on the inside of your cheek. I would really have an ENT look at it ASAP. Pushing is the only way to go. Our medical system is great but sometimes you need to make noise. Good luck and try not to worry too much.


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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