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National Cervical Cancer Coalition


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PostPosted: Wed Feb 10, 2010 10:09 am 

Joined: Thu Feb 04, 2010 5:15 pm
Posts: 17
Location: usa
Hey everyone!

Great board! Glad I found it!

First, the basics: Male. 32. Married / with my wife for almost 9 years. Ex-casual smoker (quit when I met my wife). I rarely drink alcohol.

A few months ago I noticed what could only be described as a skin tag on the front underside of my tongue. I didn't think anything of it and basically ignored it and moved on with my life. Well... apparently I was due for another bout of hypochondria because with absolutely no provocation,  I started freaking out about it. I spent hours and hours scouring the internet looking for information on "skin tags" on the tongue but came up with nothing. What Google did leave me with was two horrifying options: Oral Cancer and Oral Warts. After doing some reading, it almost seemed like they were one and the same.

I spent many additional hours searching for info and carefully inspecting photographs online. Unfortunately, nothing seemed to look like what had grown in my mouth.

I immediately scheduled an appointment with my dentist. Unfortunately, he was booked a week out so I spent the next seven days obsessing over this foreign object in my mouth. My constant fear and worry affected my work, my interactions with my wife and son... the whole nine yards! I literally wanted to do nothing but scour the internet or sleep.

Anyway, my appointment was last thursday. After my cleaning, I mentioned the "tag" to my dentist. After visually and physically inspecting it for literally 10 seconds, he matter of factly says "it's a papilloma. It was probably caused by friction or injury to the tongue." No mention of HPV. No mention of cancer. Nothing. He said removal was totally optional and could be done at any time. Basically, he didn't seem concerned about it in the slightest. Before he could even finish talking, I enthusiastically informed him I wanted that thing out of my mouth asap! An appointment was scheduled for today (2/10). He quickly explained the procedure (a quick snip and MAYBE a stitch) and then said that it was normal procedure to send the hunk of tongue off for biopsy. He said that he was "99.9% sure that it was nothing to be concerned about." I asked him if he's seen these before. I don't remember his exact words, but he basically made it sound like he sees them on a pretty regular basis.

So here I sit. On the internet. Unable to find one single website that mentions papillomas in the mouth WITHOUT mentioning HPV. I was hoping for a sense of relief but instead I'm mortified. I feel as if I was just handed a death sentance via oral cancer if this was indeed caused by the HPV virus. Does anyone have any insight? words of wisdom? anything? I'm really kind of grasping at straws here.

Honestly, if it wasn't for my wife, who's extreeeeeeeemly supportive and has pretty much said she could care less what grows on my body, I'd probably be in the loony bin right now.

Here's a pic of my tongue for anyone that cares. The pic's a little deceiving... I think because of the angle I shot it at. The growth flaps around like a skin tag and isn't nearly as wide as it looks in the photo.

Image


Last edited by morty_warty on Mon Feb 22, 2010 1:58 pm, edited 2 times in total.

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PostPosted: Thu Feb 11, 2010 4:01 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi Morty,

Keep in mind that most visible HPV-related lesions are associated with "low risk" types of the virus that aren't usually an issue with cancer. Even the "high risk" types rarely progress to cancer. You did the right thing getting medical advice and hopefully the result from the biopsy will tell you what you need to know.

Oral cancers related to "high risk" HPV (technically these HPV cancers are "head and neck" rather than oral diseases) are uncommon, and in fact are a small subset of head and neck cancers that are rare themselves. Most HPV head and neck cancers actually affect the tonsils.

Hope this helps, please keep us posted if you don't mind and let us know what you find out.

Best,
Fredo

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PostPosted: Thu Feb 11, 2010 4:37 pm 

Joined: Thu Feb 04, 2010 5:15 pm
Posts: 17
Location: usa
thanks for the response!

I will definately keep you updated.

the entire situation is completely confusing. I've visited hundreds of websites and read hundreds of articles and most of them contain info that completely contridicts the other.

some say oral papillomas rarely return once treated. others say they have a high level of reoccurance. some say they can be left alone, others say they need to be treated. some say they are easily spread. some they they aren't easily spread.

then there are the statistics. some sites say it's just another risk factor (like smoking) others say hpv increases your chances of cancer much more than things like smoking or drinking.

other sites say hpv 6 & 11 have no chance of turning in to cancer. other sites say low risk strains increase your chances of cancer 32 times while high risk strains increase your chances by 58.

to be honest, I don't know what any of those statistics really mean. if I'm 32 times more likely than a smoker to get this particular cancer, it almost seems like it's certain to happen.

any advice on comprehending these types of statistics?

I really feel like I should just draft a will and wait to die.


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PostPosted: Mon Feb 15, 2010 9:40 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hey,

Not sure about all that, but my understanding is that virtually all HPV-associated head and neck cancers - which are not at all common - are linked to HPV-16 and most often affect the tonsils. HPV 6 and 11 have low potential to cause cancer.

Fredo

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ASHA Moderator


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PostPosted: Mon Feb 15, 2010 12:34 pm 

Joined: Thu Feb 04, 2010 5:15 pm
Posts: 17
Location: usa
Just curious... and this may be something you (or anyone else, for that matter) are unable to answer... but it I were to have a "high risk" strain of HPV, would it be found in the papilloma that was sent for biopsy? Or would only the strain that caused the growth show up?

If a person had both high and low risk versions of the virus and a wart was biopsied from, say, the genitals, would it only come back positive for the specific strain that caused the wart or do all the strains a person have tend to congregate together?

I'll tell you what... over the years I've done lots of reading on lots of different illnesses, diseases, viruses, etc... and HPV is easily one of the most confusing I've run across. The amount of contradictory info out there, from normally reputable sources even, is unbelievable.

I did schedule an appointment with an ENT for tomorrow (despite not having biopsy results yet) hoping he could shed some more light on the whole thing for me... maybe ease my mind a bit... or at least set me straight. This whole thing has really made me feel like I'm going insane.


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PostPosted: Tue Feb 16, 2010 11:30 pm 

Joined: Thu Feb 04, 2010 5:15 pm
Posts: 17
Location: usa
Well... I had my appointment with the ENT today. He was a very knowledgeable and friendly guy.

He did a complete exam (checked the ears - boy, were they dirty!) as well as my nose. Nothing of note found.

...Then he moved on to my mouth and throat.

Luckily, there were no other suspicious "growths" to be found. Finally something that resembles 'good news', I suppose.

My dentist still didn't have my biopsy results so his advice was based on the assumption that I was infected with a LOW RISK strain of the hpv virus.

In a nutshell, he said not to spend too much time worrying about it. He also didn't think any extra special "surveillance" was necessary. Basically, he recommended that I just have my dentist give my mouth the once over when I go in for routine cleanings.

Though I won't know for sure until the biopsy results are in, I would say with great confidence that I have oral HPV. I spent weeks trying to fool myself in to believing that the results would come back saying otherwise, but realistically, I'm now just crossing my fingers hoping that it "just" a "low risk" strain.

Seriously, folks...

I am married. I have been in a loving, monogamous relationship with my wife for almost a decade. Despite being a bit overweight, I'm healthy and have a decent immune system. To the best of our knowledge, neither myself or my wife have ever had visible genital warts. While we have an active sex life, oral sex does not play a big role. To be quite frank, I can say with 100% certainty that I have performed oral sex on my wife exactly two times in the past year. Why am I telling a bunch of strangers this? Because despite our lack of visual genital symptoms, despite our health and despite the fact that oral sex is almost non-existent in our bedroom, it appears I've ended up with this supposedly "extremely rare", "difficult to catch" infection in my mouth. It's not my intention to scare anyone, but if someone in my shoes can contract oral HPV, anyone can.

The more I read about the subject, the more I begin to think that the number of reported oral HPV infections are grossly underestimated. If testing became available, it wouldn't surprise me in the slightest to read that oral HPV is almost as common as genital HPV.

I think it could be decades before we see the true impact this virus has on us.


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PostPosted: Fri Feb 19, 2010 3:18 pm 

Joined: Tue Jun 24, 2008 12:26 pm
Posts: 127
Morty, I'm in the same boat you are and I just can't get anyone to listen. I agree with you 100%.


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PostPosted: Mon Feb 22, 2010 2:22 pm 

Joined: Thu Feb 04, 2010 5:15 pm
Posts: 17
Location: usa
Well, the biopsy results are in. they read as follows:



Gross Findings:
Received in a container labeled with the patient's name are two minute soft tissue pieces measuring less than 0.3 cm in greatest dimension each. they are not sectioned and are submitted entirely as two pieces.

Microscopic Findings:
One soft tissue is entirely examined. It appears that the second specimen has been sectioned through. Mucosal and papillomatous fragment is surfaced by parakeratinizing and acanthotic stratified squamous epithelium. There is basal cell hyperplasia. The connective tissue core is characterized by increased vascularity.

Diagnosis: Squamous papilloma, tongue

Primary Dx Code: 210.1 Benign Neoplasm Of Tongue




My dentist mentioned that squamous papillomas are often caused by the hpv virus but also said it can also be a generic term for things that grow in the mouth / on the tongue. weather he was trying to be comforting or not, I find nothing on the internet that refers to a squamous papilloma as anything other than a wart caused by HPV.

No typing was done on the papilloma so I have no idea which strain caused the growth, though I can only assume by all I've read that it was 6 or 11.


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