How are you feeling a few years later?
Bottom line, people posting on here are looking for support, perspective (not statistics). My doctor told me to be careful what you read on-line because there is hardly any if no perspective on this topic. Tornsten- your facts on this topic make little or no sense to someone who just needs a shoulder to cry on, or just some words of encouragement. I appreciate your bursting knowledge of this topic, but just remember, statistics found from a conference or a website don't help a grieving male/female that is trying to just understand "a little". Tony, you are better off listening to someone who has been through this. Communication with your doctor is key. Get their perspective. Best wishes.
I think your apology to Tony was appropriate. I think you can tell by his posts that he is trying to understand this and has great anxiety. There is so much inaccurate information on the web.
It is true that the cervical screening program has brought done cervical cancer. However the incidence of cervical cancer was far greater than oral or penile cancer (VIN, VAIN or anal) and the death rate due to cervical cancer has decreased 70% since the Pap smear was introduced 50 years ago. The Pap smear has done a great job and is the best we have even though it is not specific—it was annual repeats that helped make it successful. Unfortunately, this is a billion dollar market for screening and a long came the HPV test that scares women and is not specific. It is really not accurate in women under 30 (and has some problems with women over 30 due to specificity and cross reaction)—the problem here is that many Dr.’s don’t know that and they do biopsy’s and LEEP’s without waiting for the HPV to clear—which can harm young women. Some physicians tell patients they have cancer when the fact is they do not or they might have a very minor dysplasia. The additional problem with the HPV test not being specific is that it was used in many of the research studies—so in my view the studies are not valid. The studies should also be done in specific geographic locations in order to be valid—a lot are done in third world countries and the results are postulated to be correct and valid for women in the US. I do believe studies done by PCR (polymerase chain reaction) and I prefer when it is matched with the Gen Bank. I prefer evidence based medicine and not “guestimate” medicine. Did you notice when you were at the conference in Montreal—that there was a lot of drug companies sponsoring the event and giving away samples. Maybe you should also research the legal battles over the Gardasil patent in the 1990’s because everyone wanted to make money off of it—the universities, the scientist’s in the lab, the NIH and multiple drug companies. Probably the reason it is so expensive because everyone is getting a piece of the pie in the form of royalties.
The Who is supposed to be an independent voice for global health and while a respected institution also has some problems with politics, influence and power. It has in the past had members taking financial donations from drug companies. In 2009, a WHO board member took 6 million euro’s for his research company for vaccines from a drug company (will remain unnamed) while he was on the WHO Advisory Group responsible for recommending vaccines—it appears a conflict of interest to me. Pharmaceutical companies give “generous donations” to the WHO. The WHO is interested in HPV and donations because HPV is a far larger problem globally than in the US and it may be due to poor nutrition, hygiene and lack of medical care in under developed countries. Finally, I can’t find where the WHO confirmed that HPV was carcinogenic (and some are), however there are over a 100 that are not so that appears to be a confusing blanket statement made by you—maybe you are confusing this with—“Persistent HPV 16 infection is a uniquely powerful human carcinogen”. I repeat persistent!
I have not seen in published material or spoken to one scientist--PhD, M.D. or M.P.H. that has made the statement as you did regarding that HPV alone can cause cancer. You are certainly welcome to your opinion but I find it doubtful. If your assumption were correct, then we would see for more cancer. It just doesn’t make sense scientifically. I think it may be more a person’s genetic makeup (and possibly environmental) but I could be wrong, but if it is genetic then there is nothing anyone can do. The facts that appear to be consistent and agreed on by the scientific community is that HPV is common and usually clears in most people, the persistent infection is rare and is at the cell level with other cofactors involved (I won’t go into the specifics). The persistent infection and severe dysplasia in women can be treated successfully. Even at this point it is not cancer. And the true cervical cancers are usually found in women in their late forty’s that have not had medical care or screening in 5 years or more. Oral and penile cancer is very rare.
I’m not sure that you should presume that everyone that posts does not have “expertise” or is an “amateur”.
I will end with I am not sure what your background is but you indicated that you were a medical student. On your profile you indicated that you were 47 years old, so that would make you the oldest medical student I have ever heard of…
Thank you for the comments and information, i actually woke up this morning to Torstens post, nothing against you torsten, but that started my anxiety and panic to an extreme high today. I called my mother frantic and couldnt think straight all day. The main issue i am having is that this seems to be a teeter totter effect , one day its this the next day its that. Im trying to stay positive, but i feel as if the negative is taking over with all the news reports and web posting of oral cancer. As for my gf, sad to say this was her first pap, she is 23 and her parents barely made any money. Her dad is bed ridden and her mom barely made enough money for the family to apply proper health care. I know there is planned parent hood and all that,why she didnt go in the past is a mystery to me. Anyways i paid for her current check up and health exam, the outcome came out that she had pre cancerous cells and that she had to come back to the doctors office asap. They perfomed a biopsy and also the LEEP on her. I asked her just now and she said the doctor told her she was moderate to severe off of some chart, and that she has dysplasia ( i think thats how you spell it) . Sorry i very new to all this , this is even my first forum and still learning lol. Thank You Hollyv for you comments , i may sleep easy to night finally.
If you are a medical student then you should take every opportunity to attend as many conferences and symposiums that you can. However one of the first things you should do is assess every lecture you hear. It is important to not just listen and take everything at face value, some of these talks can be very influential—go back and look at actual research (see if it is a large or small study, look at the predictive values—positive and negative, and the specificity and sensitivity) and also find out who funded the research. Most of the research is monetarily motivated and that should be the #1 rule to understand. The Montreal HPV 26th International 2010 conference had some very distinguished speakers however a lot of even these scientists and physicians are motivated by money. The link that you posted above is an opinion & discussion piece and it is really more public health related to overall cost. And there was a paragraph at the beginning of the paper that in your link was not there. To sum up your omitted paragraph, it said, “The material was prepared for Residents (Dr.'s in a four yr training program after internship). It was prepared to stimulate discussion and that there was no warranty, express or implied as to accuracy or completeness”. There were many times it stated in the article that more research needed to be done and I did find some inaccurate statements in the piece. My understanding is that HPV does not cause cervical cancer, only persistent HPV with additional unknown factors does. It is very possible these additional unknown factors—“either genetic or environmental”—are also responsible for head and neck cancers. The fact remains that cervical cancer is low in the United States and so are head and neck cancers related to HPV. Even the HPV test in the US has a problem with sensitivity making it not accurate, especially in women under 30. Most physicians that I know do not post opinion pieces to scare people and actually in practice they are supportive of their patients. Sometimes a little information is dangerous. The amount of oral or cervical cancers compared to the amount of people that have sex is also low. Your inference that people should be concerned is ludicrous—should the entire universe give up sex. The comments you made will make some people with a simple canker in their mouth become hysterical. As to your HPV vaccine suggestion for men—I would warn men to do their own research before taking it. There have been deaths and serious side effects in young women. There has been a dramatic reduction in the US in women who are consenting to receive it. And some women took one dose but it is also documented that they don’t finish all three. There appears that there were some problems with reporting data in some of their studies. A good researcher also knows that data can be skewed. Furthermore, my understanding is that there is efficacy with the vaccine for HPV 16 at 5 years, but the titers can start to wane for 6, 11 and 18 before that time. It appears to be an expensive vaccine for only 4 HPV types (out of over 100) especially considering that there is no long term studies on the length of time it will be effective; and in view of the additional fact that most HPV is transient and resolves on its own. Your suggestion that vaccination for boys will be the solution is not supported by research. Taking any vaccine should be done after researching all the literature and making a choice regarding your personal risk.
Torsten47--What you left out is people can be exposed and never get HPV. There are also women that get cervical cancer and their partner never gets oral, penile or any other HPV or cancer even after being exposed for years. There is a lot that is still not understood about HPV but fear does not help--research needs to be statistically done and validated with large studies by academic institutions--not promoted or funded by vaccine or drug companies or venture capitalists.
To Tony2377: Your chance of getting oral cancer is extremely low. Relax and any symptoms that you have now is from general anxiety. You need to get over this in order to continue to have a normal sex life. Millions of people have sex and very few get cancer from it. You have a greater chance of being in a car accident. How old is your girlfriend and what was her Pap result—Was it simply an ASCUS Pap? When did she last have a Pap prior to this? There is no reason to assume that you have HPV even if you were exposed.
I couldn't have said it better than vandykd3, as I have been through those panic attacks, and yes there are certain people who will want to feed your fears. It is bad enough having the mainstream media sites monger the fears with statistics that sensationalize and we get our feathers ruffled when we read posts from people merely echoing the fear mongering. If you read the STD expert forums and read the credentials of Dr. Hook and Dr. Handsfield, you will know they have far more experience in the study of STDs than the fear mongers, so you then decide who to believe! Easy decision!
First off let me assure you that anything you feel in your mouth or throat is completely made up. If you aren't aware of the power of the mind by now I guess you will be with this episode you are going through. Those "symptoms" are completely mental. It happened to me and my oral fears and I've seen it enough on this site to recognize it in you. Don't worry about anything bad happening to you because nothing is going to so it's all good. Alternatively I guess you could do what the Samurai of old did and mentally focus on the worst possible death from it to desensitize you and make you a better warrior. :) But I think the former is better advice. I'd be more worried about car accidents or breathing in too much air pollution before I'd feel a threat from HPV. It's just that HPV is new and sudden and the other two don't feel so threatening even though they technically are. Again, you'll be fine and you don't have HPV in the oral cavity most likely and even if you did which is unlikely, you'll even less likely develop any long term effect from it. Try and accept this as best you can.
Thank you very much for your words it really means a lot. I know it's the anxiety issue that's making this so horrifying. I never had anxiety before or dealt with an issue as hpv. I have two little boys and am a single parent so Im so afaid of leaving them alone by my stupid decision. Your words actually brought tears to me because I feel like I'm alone in this fight. I've been feeling weird feeling in my throat kinda tinglyand the roof of my mouth kind feels like after u ate a bag of chips n have little cuts. This just started yesterday, I'm not sure if I'm just mentally developing these symptoms due to fear n anxiety. The mind can play tricks on you. Also I have a small little pea like bump behind my right ear on the crease that iv noticed yesterday as well. Thank you for your support n if anyone can answer any of theses things I'm feeling please help.
Tony, I've got some things to say as well. I've been on this site for almost a year and a half so I've some perspective that you should pay attention to. Also, nearly everyone who responds on this site right now is very intelligent, rational minded, and educated so if we tell you something take it to heart. But beware of Malin1 because he's obsessed with oral hpv and very doomsday.
What I've noticed over this last year plus is from reading all the posts and simultaneously dealing with my own journey with HPV. I've noticed psychological patterns in people and been able to compare that with my own mental methodology. Firstly, freaking out is by far, nearly 99%, the most common reaction of people seeking help and info here. It's crazy but understandable. So you are not alone in how you feel. Nearly everyone goes through the same stages as well, super freak out with all the associated sleep disturbances, appetite issues perhaps and whatnot. Then as time goes by they get educated and have some time to think and consider and rationalize and sooner or later they calm down and deal with it much better. HPV is a nuisance as worst for nearly all of us. I'm not discounting that bad things can happen for a really small percentage of people (more on that later), but for the vast majority of us it's a non-issue. Even for your girlfriend it will most likely prove to be this way.
Now the difference that I've noticed is the degree to which people freak out and that is really what I want to focus on. I don't know you so bear with me and discount what you need to, but I would offer that the first thing you need to do is educate as much as you need to have the facts to alleviate your mental strain. You are doing that so that is good. Now take it from here. If you can't calm down, which you've said you can't yet, and it doesn't calm down much for a while then we are dealing with anxiety issues more than HPV and anxiety is your problem not HPV. Trust me on this one. I have general anxiety disorder and I'm unmedicated and HPV has F'd with me. Plus, I can see by your words that you are definitely on the hardcore end of anxiety reaction to your girlfriends diagnosis.
You will never be able to move from uncertainty to certainty with this oral HPV thing. If you truly do have anxiety you'll take that nugget of not knowing and run amazingly far with it, all the way to the ER on some occasions. Your biggest challenge with this could very possibly be anxiety related and not STD related at all. This is all something for you to consider as one Forum Friend to another. If I can alert you to the dangers I faced perhaps you can start by shining the light where it should be shown and therefore really help you calm down and accept the fact that though you may never unequivocally know your throat is okay, you really are okay and there is nothing to worry about.
Good luck man, I'm really not worried for you at all.
Just remember, its super rare to die from oral cancer...there is so much these doctors can do to supress all these strains...hang in there, and don't worry, its not the end of the world, it really isn't. Just make sure she gets treated for everything and communicate. I cant stress how important communication is. You will be just fine! :)
I appreciate the response, im trying to calm down think this clearly but its very frightening and ill be honest i cant seem to shake it. I know cancer will not show up for years and thats the scary part, it states that men are not seeing these cancer issues until 10-20 years later and by the time they find out its too late . I cant get this fear of death out of my head , im not trying to sound like a psycho because i was never like this before now its hitting me in the face all day every day. Do i believe the facts that are posted online, are they 100% positive because its not just on one website its all over. Thanks again
Relax! Oral cancer isn't very likely from HPV...don't go overboard with what you read on the internet. Its a scary world out there and there no need to freak out! You just need to be safe! Talk with your doctor about any concerns and everything will be just fine. Pre-cancerous cell DON'T mean oral cancer for you. There are so many posts on here about this issue, and if you read up, you will see...that its very unlikely, and cancer doesn't form for years and years...her strains will probably be gone in no time.