I have a quick question relating to my diagnosis. The hospital is beating around the bush and will not confirm whether my cancer was from HPV or not. My surgical oncologist mentioned that HPV is only related to cancers at the BOT and neck. Should I push to have them test for this? Is there anyone out there who had SCC in the front of tongue who was HPV +?

Thanks!

If they did not test for HPV then they have no answer. If they did, they should be able to tell you the results. My understanding HPV status does not factor into the treatment plan, so some doctors may feel it is not critical info to have. I may be way off base but that is my understanding of it.

Overall survivability is greatly influenced by HPV status so it is something you may or may not wish to know.

From what I gather base of tongue is more associated with HPV+, front of tongue tends to be more common in smoker related oral cancer.

Don

No expert here, but we're specifically talking about HPV-16, which 90% of the time it is if HPV cancer related, and to a lesser extent, HPV-18, which effects the oropharynx. There are cases of HPV-16 occurring in the oral tongue, to what extent is not sure, and some thought is it may be a misdiagnosis as oral tongue or a metasteses when it was in fact the oropharynx, BOT all along. HPV-16 can occurr in the nasopharynx and larynx also, but majority of cases is the oropharynx, and is where they should look for the primary. Treatment is pretty much the same for HPV positive or negative in the oropharynx, but in the oropharynx there is better response to treatment and prognosis, but that's only in the oropharyx, and no positive change in survival or response is seen outside this area. There are trials for treatment deescalation for HPV positive oropharynx cancer. If they did a surgical biopsy, they should still have a sample on file, frozen section, which can be tested for HPV.

agreed. Usually oral tongue is NOT related to oral tongue cancer. But this does have bearing on treatment. HPV related cancers often respond very well to rads and chemo because of this they often avoid doing surgery. (Unless it's in the tonsils or a massive tumor they want to debulk) usually non HPV related oral tongue cancer is treated with surgery first (hemiglossectomy possible flap - and nodes) or cheek or gum cancer is often treated the same way.

Hugs

The NCCI standard of care does not differentiate different courses of therapy based on HPV status. We all know it will change once sufficient studies are fully vetted and the medical community coalesces around the finding that the etiology of HPV p16+ is different and is treated differently.

In addition, NCCN guidelines recommends tumor HPV testing as part of the initial work-up for oropharyngeal cancer, for prognostic purposes, but there is no recommendation for HPV testing in the oral cavity, elsewhere, in the head and neck.

If you want your cancer cells tested, TELL THEM.

Mr. Fish (aka Se�or Pesce), is there a particular reason you want to know? I suspect the bean counter in you is looking at numbers. That's just what we do. If you zero in on the recurrence rate of HPV+ as a predictor of future problems, you discount the massive benefit you received from early detection. That alone is a huge factor!

Keep on...you rocked it up to this point and no reason to believe that will change.

Ed

Gawd...I love the last phantom post.

Copy & Paste = Phantom Posts = No-No.

Se�or Pesce, I am curious why you want to know at this point. I would guess because you are a numbers guy and have been looking at statistical recurrence rates for HPV+ vs HPV-. I think the more relevant thing to consider is the stage of your cancer. You were very fortunate to have found it so early.

Makes no sense why these disappear.

Maybe it is the long length or maybe some words are kicking it out or maybe I'm just screwed but we will never know unless I can figure out why the f*ck this happens so regularly and it is so annoying and really takes away the fun of being able to post anything but one line although I am the King of One-liners anyway so maybe I keep typing just to see if the length has much to do but maybe the micro moon isn't aligning right with the stars and all that kind of stuff that could explain a lot of things to someone I suppose.

As I understand it, they disappear because instead of typing a post directly into the posting box, the message is written on another area, like Word and then copied and pasted into this box. That's what happened to me, anyway.

Im sorry if it is frustrating.

The blank posts are a known issue when copy/paste is used. This is due to copy/paste picking up "ghost" characters. If you type directly into the box it should not go appear blank.


Sorry about the temporary hijack! Please lets get back to the original topic.....

I directly typed into the Quick Reply box, viewed after submit but then the post disappeared when I was redirected, the same as before. I have never used copy and paste and I'm not sure if ghost characters can be submitted via keyboard. All instances of phantom posts have occurred on an iPad and never on a PC. I'm more suspicious of the iPad at this point. Even on Internet browsing, the iPad has slightly different results of similar keystrokes which leads me to suspect something about the keyboard mapping/translation of the iPad.

Also, in all instances longer content posts only resulted in phantom posts. Short content always submits fine. Lastly, corrections are always done on long posts before submitting.

I hope this additional information assists the technical support staff assigned to this. Maybe it is as simple as a double key press creating a control character not understood by the forum software.

Re the original topic " Is there anyone out there who had SCC in the front of tongue who was HPV +?" My son, a non-smoker had SCC under his tongue on the right side His doctors said because of his age and being a non-smoker, it was possible it was HPV related and would have a more successful recovery rate. They never mentioned testing and it was never requested. You can request that they test the tissue for HPV, if they still have the tissue.

About 7% of oral cancers on the mobile tongue have no known etiology. No HPV, no tobacco, no alcohol. Obviously this is some shared lifestyle issue or a genetic predisposition, but the truth is in that small percentage of people at this time we do not know what is causing them. HPV is almost exclusively found in the posterior mouth, I have yet to meet an anterior tongue HPV patient. We do know that some unusual oncogenic HPV's can be found in studies on the anterior tongue, but they are pretty rare, and because they are different than HPV16 we have no data on long term outcomes. They are HPV 33, 31, and 35. Testing for these particular sub types would have to be done at a university research facility and is out of the realm of ordinary pathology labs. They likely never discussed testing since the treatment would be the same whether it was HPV+ or not at this point in time.

Thank you for your replies. David, I was trying to obtain information from the group since I couldn't find anything on the internet regarding HPV in front oral tongue. I would have approached the hospital to test it if I didn't find my answer on the pathology report. The finding was HPV- located on the last page. There is a great deal of information to go through in order to be my best advocate for treatment.

Mine is on the side of my tongue, originally further back but still in my mouth. The first biopsy did test HPV+. They did not test this recurrence but I would imagine it is the same. It happens, who knows why.

My husband had a large T3-T4/N0/M0 tumor in the middle back of his oral tongue. He was NOT tested for HPV. He would have lost over 75% of his tongue and the ENT was talking possible laryngectomy, permanent feeding tube, etc. and he opted for chemoradiation from another facility. He finished treatment 1/19/2013 and had a complete response to treatment; he is NED.

I'm saying all this to say I know HPV+ cancers are associated with the oropharynx but he had an old scar on his tongue right where the tumor developed and we think he may have had BOT otherwise. His previous wife had cervical cancer at age 23.

I read an article/paper on Medscape early on that I seemed to remember was from S. Korea from 2011 that said they were finding 35% of oral tongue cancers that were tested were HPV16+. I think if oral tongue cancers were routinely tested as well as BOT and tonsil cancers we'd see a chunk of these cases are HPV+ as well.

Research by Dr. Maura Gillison of THE Ohio State University & John Hopkins (that OCF has helped fund) indicates approximately 70% of oropharyngeal cancers are caused by HPV.