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National Cervical Cancer Coalition


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PostPosted: Fri Apr 15, 2011 11:55 pm 

Joined: Sun Feb 27, 2011 11:56 pm
Posts: 7
Location: USA
I am a man living in the US with HPV. When i was first diagnosed with this, honestly i wasnt too put off about it, i figured you know what this is what happens if you have sex and are not careful enough about it. I figured hell this is way better than having HIV or i thought at the time herpes. So after a few years of having hpv, having genital warts come and go, i thought everything was fine. All this time i had the same girlfriend and was happy. That is up until about 5 months ago.

I gave my girlfriend oral sex after a year of her being HPV free. Now i have hpv in my mouth, yes physical warts, and possible cancer. I have been in and out of doctors offices once a week for the last 5 months and i have been on antiviral meds to control the virus living in my mouth. My risk for cancer is the same as a womans now and some say higher. Not only is this at times unsightly to look at, it is extremely painful. For whatever reason having HPV orally is very painful, i dont know if women experience this vaginally or not but i thought i would add that because there is limited info about this out there.

I am saying this as a warning to anyone who ever wonders about oral sex and HPV. You can and most likely will get the virus in your mouth if you orally come in contact with it.

Take this as a warning, i feel it is my duty to say this because i wish to god someone had warned me. DOCTORS ARE IN THE DARK AS FAR AS I AM CONCERNED.


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PostPosted: Tue Apr 19, 2011 8:44 am 
Site Admin

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

Thanks for your post and I'm sorry this has all been so difficult. Painful oral lesions like you describe must be just miserable, to say the least. HPV-related lesions don't normally cause much pain, but each case is different and yours sounds to be especially difficult.

I'm curious as to your exact diagnosis. You mention a cancer risk, and the types of HPV that cause warts typically aren't the same as the ones that are linked with cancer. Even with "high risk" types of HPV, oral and other cancers are a rare outcome. What is your doctor telling you about this, if you don't mind me for asking?

Please post anytime.

Best,
Fredo

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ASHA Moderator


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PostPosted: Fri Apr 22, 2011 6:54 pm 

Joined: Thu Feb 04, 2010 5:15 pm
Posts: 17
Location: usa
as someone that has had an oral papilloma removed (from underneath my tongue), i too would love to hear what you've actually been told.

i've been told by several dentists as well as by an experienced ENT that the strain that causes papillomas rarely if ever have malignant tendencies. all three said they have never seen a papilloma transform to a malignant growth.

after being diagnosed, i went in to full on freak-out mode and read every article on HPV available and found little to no evidence / information regarding non-HPV 16 (& 18) HPV-related h&n cancer.

you say you have "possible cancer in your mouth" then later say the risks of you getting cancer are "the same as a womans'"

did they find a suspicious lesion that required biopsy? did they do a HPV test checking for high risk strains?

or are you just assuming because you have warts in your mouth, you're at risk for cancer?


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PostPosted: Sun Apr 24, 2011 10:34 pm 

Joined: Sun Feb 27, 2011 11:56 pm
Posts: 7
Location: USA
Well i have been diagnosed with oral hpv, to be honest with you i dont believe i am in the same boat as someone who has had one or two lesions in there mouth. If i were to leave this untreated.. which i have had to do when doctors tried to take me off of antiviral meds, it gets out of control in a matter of a few weeks and i can barely eat anything. I have had at one point probably 30 plus lesions in my mouth and my tongue was completely white with lesions. Completely awful to say the least.. its not like I am some swinger or something i have only had 4 sexual partners in my life so this could happen to anyone.

So far since december i have been on a regiment of antiviral meds to keep this down, and it does work, which i am very thankful for.. my life wouldnt be possible without these meds and i would have had to stop working and basically my life would stop because of this.

I have been told by my doctors that the risk is much higher for cancers if you have HPV lesions present in your mouth and they are left untreated. My doctors have been considering it the same way they would if a woman had it vaginally because the membranes in the mouth and vagina are very similar.

I have an appointment with one of the best infectious disease doctors on the east coast coming up in about 2 weeks so i will update you with news then and try to clear some of the myth from the truth, because honestly doctors that are not specialists in this area dont have any idea what to do or how to treat this in the long term.

RIght now i am doing well though, only have one lesion on my tongue and im taking about 200mg of antivirals 5 times a day and it is keeping it down.. that is a low dose for me so i am doing well right now, might even start going to the gym again.


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PostPosted: Mon Apr 25, 2011 2:05 pm 

Joined: Thu Feb 04, 2010 5:15 pm
Posts: 17
Location: usa
it would be interesting to hear what the infectious disease doc has to say.

I think if what you have in your mouth are simple papillomas, your current docs are a bit off. there's no real evidence that oral papillomas can become malignant.

I was even told by my dentist and ent that removal as completely optional.

sorry to hear about your ongoing issues.

let us know what you hear.


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