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National Cervical Cancer Coalition


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PostPosted: Tue Oct 26, 2010 3:21 pm 

Joined: Mon Oct 25, 2010 9:32 pm
Posts: 5
Location: New York
Hi all - I'm new to this message board thing but I thought I'd join because it'd be nice to talk with people who may be in a similar situation as me.

I just found out I tested positive for hpv and I'm devastated - I've only had two partners and I feel just so down and saddened to have gotten something that seems like people are still trying to completely figure out and something that is in the gray area that your body may rid or not rid.

I'm so worried about everything - feeling paranoid - my boyfriend has been very supportive - but this has taken over my life where I can't focus at work, no interested in doing anything and I can't even sleep well through the night anymore. As common as this is and as there are many people who have and dont even know - it does not make me feel any better!

I have my biopsy scheduled soon - and I'm a nervous wreck - though my dr told me not to worry and to try to sleep well I still am worried. I tested neg in april with an abnormal smear and then a new dr I went to said I was positive but I changed drs because I didnt really like her bedside manner. So now I'm here with my 3rd dr who is telling me to chill and to take a blood test for hpv since he didnt get enough cells for my smear to test for it. He did not seem too concerned about knowing the results o

Oh gosh - I really feel like this year has been so horrible for me . . . now I'm paranoid about possible transmission of the virus orally - and I've only performed oral sex literally 3 times. What are my chances? Do I even want to know if I have it? Am I going to get cancer? Will I be able to live a normal life? How do I cope ? Am I ever going to get rid of this thing from my body? Should I stop having sex with my boyfriend? And if he is the one that has it - does it mean I'll always have this virus?

My throat is killing me and so sore - im so paranoid now and convinced that I have it in my throat and have cancer in my throat.

Sorry all - its hard when there is no one to talk to about this and everything always seems to explode and seem to be extremely frightening - I really dont handle stress well.

I've been trying to convince myself that having this virus is worse then having a bad allergic reaction to peanuts . . . or something else thats really horrible . . . .its just not working . . . *Sigh.

Help anyone?


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PostPosted: Wed Oct 27, 2010 2:35 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi and thanks for posting. It's not unusual to be upset, even really upset, after first finding out about HPV. Lots of people report feeling anxious, blue, and so on, and that's understandable. Let's take a look at your questions:

I just found out I tested positive for hpv and I'm devastated - I've only had two partners and I feel just so down and saddened to have gotten something that seems like people are still trying to completely figure out and something that is in the gray area that your body may rid or not rid.

Most experts believe the body does clear HPV naturally, but the virus may exist at some latent, undetectable level in those whose immune systems have "cleared" it. For most people this is never an issue unless their immune system becomes badly compromised down the road. It isn't clear what impact this might have on transmission to future partners, but few of the experts I've encountered believe an HPV infection is likely to always be transmitted to new partners. The tough part is there's no test to figure out when someone may have reached this point.

I'm so worried about everything - feeling paranoid - my boyfriend has been very supportive - but this has taken over my life where I can't focus at work, no interested in doing anything and I can't even sleep well through the night anymore. As common as this is and as there are many people who have and dont even know - it does not make me feel any better!

Yeah and, again, you're surely not alone in feeling this way. Anything to do with sex etc. tends to put us on edge, especially when you read about HPV being linked to cervical cancer. Fortunately, cancer of any type is a RARE outcome of an HPV infection, and typically occurs in women who either have never had a Pap test or have gone many years without one.

Oh gosh - I really feel like this year has been so horrible for me . . . now I'm paranoid about possible transmission of the virus orally - and I've only performed oral sex literally 3 times. What are my chances? Do I even want to know if I have it? Am I going to get cancer? Will I be able to live a normal life? How do I cope ? Am I ever going to get rid of this thing from my body? Should I stop having sex with my boyfriend? And if he is the one that has it - does it mean I'll always have this virus?

Couples are presumed to share an HPV infection, usually impossible to figure out the "when" and "from whom" questions. Unlikely couples sharing the virus will "ping pong" it back and forth...some small studies suggest using condoms helps clear the virus and related lesions a bit more quickly. Continuing your normal sex life with your partner is not likely to be an issue, though.

My throat is killing me and so sore - im so paranoid now and convinced that I have it in my throat and have cancer in my throat.
There is a link between some types of HPV and specific types of head and neck cancer (which includes those of the oral cavity) but keep in mind that head and neck cancers are actually pretty uncommon, and a relatively small subset of them is thought to be linked to HPV. We can't tell you what's causing your symptoms and ask your doctor etc etc. We can say that oral cancer linked to HPV is even less common that cervical diseases (which themselves are rare).

Sorry all - its hard when there is no one to talk to about this and everything always seems to explode and seem to be extremely frightening - I really dont handle stress well.

I've been trying to convince myself that having this virus is worse then having a bad allergic reaction to peanuts . . . or something else thats really horrible . . . .its just not working . . . *Sigh.

One thing to say about having HPV: It means you're very, very normal!

Best,
Fredo

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ASHA Moderator


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PostPosted: Wed Oct 27, 2010 10:51 pm 

Joined: Mon Oct 25, 2010 9:32 pm
Posts: 5
Location: New York
Thanks Fredo for your response . . .

It also just baffles me that though how though it is uncommon for hpv to cause head and neck cancer which is even more rare then cervical cancer that it is able to still be in the oral cavity even if you do not perform oral sex often. (Read one post from someone on this board who said they've only performed twice on his wife and found out that he has hpv in his mouth)
To be honest that one post really worried me and made me wonder - how would his experience be explained? and how easily just is hpv transmitted from skin to skin and are their certain conditions that have to be there for transmission to occur?

So what you are saying is that it is pretty rare for hvp to be in the oral cavity? or that if it is in the oral cavity it is rare that it would cause oral cancer? all this is so confusing and whats frustrating is that it seems that oral testing for hvp is not widely available though hpv is so common.

Strange how one virus that is transmitted sexually can really turn a person inside out when there are probably a myriad of other viruses in our bodies and bacteria that are probably undiscovered still and hpv is just another one that is now identified.

Thanks again Fredo . . . I'm still lost as to if I should go see a dentist, or oral surgeon or an ENT or something . . . any suggestions what I should do? Or maybe not do anything at all since if it is so rare and uncommon?

I am waiting for blood work to come back to see what the results are ( still kind of in denial about this) . . . . .


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PostPosted: Sat Oct 30, 2010 11:00 pm 

Joined: Thu Feb 04, 2010 5:15 pm
Posts: 17
Location: usa
hey there! i'm the guy that posted about being told i had hpv despite rarely engaging in oral sex.

what fredo is saying is that head and neck cancer caused by hpv is a rare outcome of a cancer that is already fairly uncommon.

to try to answer your other questions:

To be honest that one post really worried me and made me wonder - how would his experience be explained?

it's explained quite easily. my wife and i had a wart-causing strain of hpv (probably 6 or 11) and we didn't know about it. that strain was passed to my mouth during oral sex.

So what you are saying is that it is pretty rare for hvp to be in the oral cavity?

it's impossible to know how common it is because most people that contract hpv will never show symptoms. right now, the only way to know for sure if you have oral hpv is to either A.) have a visible wart or B.) have an hpv-positive head or neck cancer. most people that are (oral) hpv positive will never develop any form of oral cancer. in fact, they'll probably live their entire lives completely unaware that they're carrying the infection.


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PostPosted: Mon Nov 01, 2010 7:49 pm 

Joined: Mon Oct 25, 2010 9:32 pm
Posts: 5
Location: New York
Thanks for explaining . . . so really is there any point into going to the dr to test for hpv (if it is even available or maybe there are many dr's that are not familiar with it yet to have the test available) . . . I just have two more questions if anyone can answer . . .

1) So should a person just go to their dentist for regular check ups and cancer screenings then?

2) So what I'm getting is that that cervical cancer is rare - but is what makes it rare that it can be caught before it progresses to the stage of cancer? so if that is what makes cervical cancer is rare because of screenings made by your obgyn then how does that make oral cancer caused by hpv rare? (Not sure if you guys see the connection I am trying to make...)

Thanks again . . . still trying to cope and I hope that my post can help others answer the same questions that I have.


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PostPosted: Wed Nov 03, 2010 11:20 pm 

Joined: Thu Feb 04, 2010 5:15 pm
Posts: 17
Location: usa
personally, i think it's a good idea for everyone that's ever engaged in oral sex to ask their dentists for a oral cancer screening. it's quick, painless and can be done during any dental visit. if you're worried about it, do it for no other reason than to possibly provide some peace of mind.

the thing to remember:

head and neck cancers are fairly rare to begin with.

head and neck cancers caused by hpv are even rarer.


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PostPosted: Sat Nov 06, 2010 3:41 pm 

Joined: Mon Oct 25, 2010 9:32 pm
Posts: 5
Location: New York
Hi thanks again for the response.

It's quite scary for me to think that the only way to know is if you have a wart or test positive for head and neck cancer due to hpv.

I thought that there was a test available for it? How in the end do you cope with this? Just keep living your life till something turns up?

This whole thing has really got me on the edge everyday- something that is so common but yet it carries some serious risks. I am just now sure at this point how to think of it and stop regretting what is already done so I can just move on with my life.

I am really grateful to find a board with people who can relate with me and knowing I am not alone with this thing.


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PostPosted: Sat Nov 06, 2010 5:58 pm 

Joined: Thu Feb 04, 2010 5:15 pm
Posts: 17
Location: usa
i completely understand your fears. i have gone through much of what you're feeling myself.

despite the fact that the strain that more than likely caused my growth was of the non-cancer causing variety, i've wasted countless hours worrying about all the "what ifs"

some advice i can give you:

1.) talk to your doctor openly about your concerns. he may very well be able to shed some light on your worries and can probably ease your mind.

2.) talk to a therapist. i did this and it worked wonders.

3.) ask for an oral cancer screening when you go in for your dental visits. be open with your dentist as to why you want one.

4.) remember that even if you do have an oral hpv infection it doesn't mean you WILL develop a h&n cancer. heck... it doesn't even mean you have a good chance of developing one. it's just another risk factor... much in the same way being overweight is a risk factor for heart disease, yet you don't see people that are 40 lbs overweight wasting their days worrying about dropping dead of a heart attack.

to the best of my knowledge, there is no test for oral hpv. there are some newer, experimental tests out there that can scan your mouth looking for abnormal cell changes but these tests aren't widely available nor is there any data on them actually being effective.


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PostPosted: Thu Jan 27, 2011 11:23 am 

Joined: Thu Jul 29, 2010 9:24 am
Posts: 31
Location: Asia
When I go to the STD Clinic for my genital warts, the nurse tells me that for every 10 patient that walks into the clinic. 7 of them are genital warts related cases.


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