I am convinced that I have had oral HPV for 10 years. 10 years ago I went to an oral surgeon and told her my fears. I had a couple of gum irritations at that time which she biopsied. They came back negative. At that time she said that HPV contributed primarily to tonsillar cancers - I guess that was the information they had at that time.

I now have tiny warts in my cheeks. For those of you with HPV poitive cancers, did you have any symptoms like this or was the HPV invisible in your mouth?

I now have an enlarged submandibular lymph node that feels lik it is about the size of a grape. It has been there for 2 months and of course, now I am quite worried.

I have an appt with an ENT next.

Thank you for your help!

Most of us had no visible things in our mouths. However a swollen node for that long a period of time really needs an answer as to why. Have him do a simple fine needle biopsy of it while you are there, not just give you a Rx for some antibiotic.

Dawn, I also presented with a grape-sized submandibular node. These can be many other things than cancer, remember - like a cyst (which is what they thought mine was). I had no warts or any other outward indication of HPV. In fact I don't think I've ever manifested any HPV symptoms at all, and I've probably had it all my adult life.

The ENT will do a find needle aspiration (FNA) of the lymph node and have it biopsied. It's no big deal, a little pinch. I know it's hard not to worry, but I was told that 80% or more of these things are benign. So take heart and let us know what he/she says.

David2

Thank you Brian and David. I wanted to thank you sooner but had some trouble logging in.

You are all heroes here. What a wonderful, supportive place you have created.

I saw the ENT today. He says the gland is soft and feels normal to him. It is the submandibular gland. He is going to see me again in three weeks and will send me for a CT if I am still worried. He did a full exam of my mouth and tonsils and said everything looks normal. He did not try to offer me an antibiotic.

So, this is good news. Next, I am going to see an oral surgeon and find out if I do have HPV and if so, what type so I know If I need take extra steps to detect oral cancer.


Thank you agin.

For those of you with HPV positive cancer - could you see it in your throat and if so, what did it look like?

I believe I have had oral HPV for many years. So, it worries me. Of late, I have had a sore throat and ear pain on one side that comes and goes. I looked in my throat and my right tonsil looks a lot different than my left(and different than it used to). It is a different shape and I see some flesh colored growths there. There are no ulcers or sores - just lumps and growths.

I also notice when I eat that tiny crumbs can "catch" on that side and bother me.

I do not feel any hard nodes in my neck.

I have an appointment with an ENT on Thursday but I am looking for your input anyway because I am quite concerned. I saw him a year ago but did not have these symptoms at that time.

Thank you for your input. You all are amazing and help others to get through an awful situation.

Hi Dawn, every situation is different. I had no visible signs on the tonsil. No soar throat, no ear problems, first sign was the lymph node. Drs checked a couple other possibilities before biopsying the tonsil, was a process of elimination.

Not sure what you mean when you say "I believe I have had oral HPV for many years"? If you did contract the virus orally then your body would have most likely cleared it and if it didn't then it would have infected the squamous cells and caused cancer which would have presented itself in much less time so it's most likely something else or perhaps a recent infection. Anyway it's best to do what you have done in getting that appt. Keep us posted.

Thank you both for taking the time to reply.

David -The thought that I would have gotten SCC much sooner if the virus was active all the time would be good news but so many people at diagnosed with this at about my age - 50. I mean most people probably contracted it much younger, right? Isn't it possible that it takes many years to develop?

Thanks and be well!

Jury is still out on that theory but the prevalent thinking is that we are infected over and over, each occurence being cleared, until one time when our immune system doesn't. Much is known about HPV but more is not.

David, does that mean that even if you have or have had HPV, being vaccinated would prevent a recurrence?

We've been looking at the vaccine long and hard for our boys. One interesting thing I've read in several places, there's a study showing that women who are vaccinated after they are infected are actually at a higher risk of cancer. If you are going to get the vaccine, seems very important to get before exposure.

Ana - If you are going to make a statement about a study that shows something, please always reference the study. Without doing this, there is no way for people to put weight on the statement.

While this doesn't necessarily apply to you, you would be surprised at the number of posters that will post some bit of information from an unreliable internet source, or a source with an agenda, such as to sell people things, or promote a perspective that is contrary to what peer reviewed papers indicate. We wish to ensure that we are only giving out accurate information.

If I were still "available" I think I would get the vaccine.

Brian, I'm copying below one of the articles I read, which references a FDA study. I'll be sure to include sources in the future. My comment was in reference to Samkl's question about vaccinating those who have already been infected with HPV, which appears to be a more complicated question that vaccinating those who have not.

I wish there was an easy, 100% risk free decision...but such things really don't exist. As the parents of one child who has already had a severe vaccine reaction (MMR, epilepsy), we know first hand the heartache associated with trying to do something to help your child, only to have it result in severe injury. Then on the other side, as I watch my husband fight his way through this horrible cancer, the thought that our sons could end up in the same position 20, 30, 40 years from now is unbearable. We are leaning towards immunizing...but we are doing so know full and well there are real risks involved. If you are going to immunize, it seems better to do so before HPV exposure/infection.

(link removed)

Hi, Ana
I read the article. She does not appear to have any sort of background in statistics from the quality of her analysis. Do you have any idea where she attended college? She styles herself a journalist but I can't find any CV for her online.
Maria

Hi Maria....I hear your points, I do not know the author of the article's background. Let's take her out of the equation, go straight to the FDA source

http://1.usa.gov/bPIdXi

Take a look at page nine, the paragraph titled, History of the HPV DNA Nested PCR Application. That's what caught my attention, in regards to immunizing someone who has already been exposed. Thoughts?

The above source is a petition to the FDA; certainly wouldn't hurt to review it, and see if any additional updates are available.

Admin note added later. A petition to the FDA is just that- a petition. It is not fact, it is not the FDA's position, and it does not include any rebuttal, acceptance, or refusal of acceptance of the information by the FDA. As a stand alone document is has little value except to say that some individual ( no credentials required) took the time to petition the FDA with this document. While many of these come from responsible researchers, some from clinicians not directly connected to the research, or from the same area of expertise, some also come from the public. Giving the same weight to all would be erroneous.

Hmmn, every citation and link is already Five years old, You would have thought this misinformation would have been corrected by now. Although how could anyone doubt the analytical abilities and statistical competence of the article by Cynthia with such an impressive resume that she has on her web pages.
[quote]Cynthia Janak is a freelance journalist, mother of three, foster mother of one, grandmother of five, business owner, Chamber of Commerce member. Her expertise is as an administrative professional. Her specialties are adoptee and genealogy research and research journalism. Hobbies: Writing prose, crocheting, Conservative Studies, and rehabbing houses. [/quote]But hey, how about a 2012 Forbes article that Ms Janak just mocked a few weeks ago
Forbes debunks Guardisil alarmists
In a nutshell, this excerpt explains why the alarmist 2007 article posted is just wrong
[quote]By the same token, VAERS can�t correlate HPV vaccines with cervical dysplasia, let alone establish a cause-effect relationship, especially when the incidence of cervical dysplasias in the vaccinated population isn�t different than in the population at large. This doesn�t mean that VAERS is a useless, lousy database, it just illustrates how uncritically using a database to probe questions it wasn�t designed or executed to address can lead you in exactly the wrong direction.[/quote]
I admit I am biased againt Ms Janak since she is a prominent spokesperson for the anti vaccine movement. In fairness, she is against all vacines, not just the HPV vaccine so at least her worldview is consistent. Also her latest article laments the "mainstream media" I am not going to link to any of her crazy posts, article or website on vaccines as it pollutes OCF IMO. Believe it or not, she actually publishes articles with titles like : [quote]Why do we get sick after vaccination or medication?[/quote]
Please, please can we have discussions on HPV and vaccines not based on conspiracy theories or woo woo columnists who cannot even understand basic statistical analysis?
Charm

Oh, and let's not forget about the bogus FDA petition. I mean the petition is real but the allegations in it are bogus. These were just statements made by a guy trying to push a new product he developed. The FDA rejected his petition and he sued. You can read at detail all the things this guy had done wrong and why the courts did not back him up.
motion to dismis
Now lets go to "Dr Sin Hang Lee, MD," the person who cooked up the numbers that are so scary and see what he has been up
Crazy is as Crazy does Oh, he has sued the FDA a couple more times - keeps losing; denounces the New England Journal of Medicine, but apparently has behaved himself the last two years.
Yeah, not quite my go to guy for medical advice.
so yes, this guy did write all that stuff in the FDA petition which was denied by the FDA and every judge who looked at it.
Please, please, don't post stuff like this here on OCF
Charm

Maria, thank you for pointing that out, I will do some more digging around to see if there is any more information. I've found your posts, informative and non knee-jerk judgemental, very helpful as we process this informaiton. With a newly diagnosed husband, an older teen son for who we need to make this decision asap and a younger son who had a huge reaction/injury to MMR (epilepsy), it's very helpful to have a reasonable voice in this discussion as we weight all viewpoints, thank you, Ana

And thankyou Ana, for stimulating the discussion. I have appreciated it. Regards, Linda

Hi, Ana
Actually, my opinion of Ms. Janak probably on a par with Charm's. However, one has to remember that science is a series of hypotheses, tests, and refinements. Vaccines have their short comings, as you already know to your grief and worry. In the future, the human race (if we don't go extinct entirely) will look back and be as astounded that we survived cytotoxic chemo, radiation therapy, and vaccines developed with a one-size fits all approach as we are looking back at successful trepanation in the new stone age and battlefield surgery in the American Civil War.
In assessing the information available, however, I would implore you to carefully review the statistical and methodological basis of the claims that are being made. What Ms. Janak says may be shown to be right, or partially right at some point - but it just seems to me that her level of proof is somewhat lacking.
Maria

Hi Maria, I'm sure your opinion is very close to Charm's. We're all under a ton of pressure dealing with this horrible disease. I have the added burden of having a very small window of deciding whether or not to immunize my son before he becomes sexually active, something that's not always completely planned out. I know first hand the very real risks of a bad vaccine reaction, remembering what my son looked like, 2 years old, grand mal seizure, after grand mal seizure, turning blue. You'll have to forgive me for leaving no stone unturned in an effort to best protect my family. I don't judge others for seeing these as easy choices, I hope I am not judged because this is yet another tough decision we are being forced by circumstances to address.

Thank you for the kind words Linda. Hubby has a huge chemo day tomorrow, thank you for sending me into it feeling a little less beat up.

Hi All
Ana, this is not to beat you up but just to share what I know about this. Given your situation, it is no suprise that you would be wary of vaccines and take the information you found exactly as you have. It is an unfortunate fact of life that people (including researchers) screw with data to get the results that fit with their opinions or the axe they have to grind. Here comes my perspective on the data ...

The submission that Ms Janak quotes is a submission to the FDA from Dr Lee to register a test for HPV. In order to persuade the FDA, he argued that his test was needed because women (they were looking at cervical pre-cancerous lesions caused by HPV) who already had active (I think) HPV infection had the vaccine, then their chances of developing grade 2/3 CIN or worse were increased by 44% compared with women who didn't. This is figure that Ms Janak took and didn't research. If she had, she would have discovered that Dr Lee misrepresented the figure. I didn't know about the stoush between Dr Lee and the FDA though - thanks Charm.

This number was taken from a substudy of the original HPV vaccination submission and specifically from substudy 013 which had approximately 160 women in each group (received vaccine vs received placebo). They found that approximately 35 women went on to develop cancer whilst only approximately 19 in the placebo group developed cancer.

HOWEVER, in the same submission, it was explained that the two groups of women were not similar and the group who received the vaccine also had a higher incidence of known risk factors including more sexually transmitted infections, higher smoking history and one other risk factor which I can't remember right now. One of the other substudies (substudy of 015) which was over twice the size of 013 found no such result and this substudy also didnt have the discrepancies in the baseline data. When the data were pooled there was no evidence that the HPV vaccine caused a higher incidence of cancer in women who already had pre-cancerous dysplasias.

IN THE SAME DOCUMENT that Dr Lee and subsequently Ms Janak misquoted, the FDA went on to reject the 44% increase in cancer finding, suggesting it was more likely a function of small study size and disparate comparison groups rather than any real difference.

I will try and find the original FDA document and for people to read but it might take a while as the submission was back in 2006 and my computer at home won't let me into as many sites as my computer at work will.

Disclaimer: My figures are approximate only as I am going on my own recollection of the figures.

Maybe Brian or DavidCPA can access the document which I think was minutes of the FDA meeting where Gardasil was submitted for registration? It was definitely 2006

Off to see if I saved the document somewhere safe - back soon

[quote]This demonstrated a limitation of the evaluation of small subgroups, where subgroups might have imbalances in baseline demographic characteristics. In this case, it appeared that subjects in this subgroup of study 013 who received Gardasil� might have had enhanced risk factors for development of CIN 2/3 or worse compared to placebo recipients. In study 015, the applicant conducted a subgroup primary efficacy analyses for HPV 16/18. Here, the evaluation of this subgroup did not raise a concern about enhancement of cervical disease due to HPV: [/quote]

I'm back!

I got some numbers wrong - it was 31 ladies who developed CIN 2/3 or worse not 35 in a group of 156 vs placebo group of 137. There are likely other numerical errors too but the sentiment is correct. They also developed pre-cancerous lesions - not cancer as I reported in the last post - sorry.

The quote above comes from the original document that Dr Lee and Ms Janak misquoted. The figures they misrepresent are in table 17 page 13.

http://www.fda.gov/ohrms/dockets/ac/06/briefing/2006-4222B3.pdf

I am not sure if I did the link right but you can go to the FDA website and just enter 4222B3 which is the number of the document and it pops right up.

Ana
you have opened up a discussion that is both valuable and interesting to many of us. thanks. I hope all goes well with your husband in a few hours.

I got involved in the HPV debate as a means of feeling useful whilst Alex was going through the worst of his treatment and it really helped me to feel like I was contributing. I hope your research does the same for you.

Karen

It's not secret that I have and will continue to object to posting false information and false statistics on OCF in a hard line tone. Why? Because even after Brian asks as nicely as possible:
[quote]While this doesn't necessarily apply to you, you would be surprised at the number of posters that will post some bit of information from an unreliable internet source, or a source with an agenda, such as to sell people things, or promote a perspective that is contrary to what peer reviewed papers indicate. We wish to ensure that we are only giving out accurate information.[/quote]
What does he get in return: Almost the textbook definition of unreliable internet garbage: A 5 year old petition dismissed by the FDA and the courts and a nut job columnist who would be right at home in the Star or Globe along with UFO sightings.
What causes cancer is not a topic to be spreading false information about under the passive/aggressive cover of
[quote]What do you think?[/quote]
The majority of OCF readers do not have the time or inclination to research and expose fraudulent postings and trust their OCF member not to post total garbage. If even one OCF reader had decided not to give their child the vaccine based on the false information here, that is one too many.
No apologies just a promise of vigilance and protection..
Charm

Karen, thank you so much for the valuable information. You and Maria have been particularly helpful as we sort through this information, given me a lot to think about. Ana

Karen mentions

"One of the other substudies (substudy of 015) which was over twice the size of 013 found no such result and this substudy also didnt have the discrepancies in the baseline data."

This is an important concept to keep in mind both for internet posts by the statistically uneducated, as well as basic research published in peer-reviewed journals. Small sample sizes are kind of like political polls - your sample MAY represent the population as a whole, but then again, it may not. How you take your sample, as well as it's size, is critical to the validity of the study to the general population, and in fact its own applied mathematical discipline.

For example, the recent data on matted lymph nodes was pretty scary (or encouraging, if you knew your/your loved one's nodes weren't matted). I'm glad it was posted on this site (although I'd seen it before) - but it's a small sample size. The authors of this study then went on to propose an alternate staging system based on HPV status, and whether or not the lymph nodes are matted. IMO, that is theorizing in advance of the data, but I suppose you have to float these ideas.

Just wanted to say that I love your vigilance and deftness at setting the record straight. I thought about commenting publicly on this thread but didn't want to add fuel to the flame. But I changed my mind and decided that speaking up is necessary here. And I know that you are one person whose commitment to the truth does not require my endorsement or anyone else's either. Thanks for being the vocal man you are. Your contribution to OCF is so valuable and your willingness to enter the fray is much appreciated. It is essential for this community that information be factual and not opinion based. I empathize with anyone facing difficult decisions regarding healthcare choices. Most of us have been there countless times over the course of treatment. It is never easy. The decision comes down to the benefit outweighing the risk.

One more thing...the medical community is one big connected organism. Research is shared. It is in their best interest and ours to act on proven results.

My best to everyone facing tough medical decisions-
Anita

Thank you Anita for the public support. It's not like I demanded a public apology for misleading the OCF community.
Sometimes non lawyers have difficulty with the concept of negligence: where someone good does not mean to do something bad, but since they were so careless anyway in what they did, they are held liable even if they really meant well.
What amazes me is that all the information you would want or need about medical advances or HPV is handed on a silver platter to OCF members in the OCF news feed which vets articles. So it's not like posters who post google search results with no consideration of their validity are filling some void. Most offenders quit doing so only after I call them on it and ignore the polite posters. Look at all the nice hints Maria gave here that were just ignored in this thread. sometimes you have to spell it out.
thanks again

I have to chuckle here. Ana, about 4 years ago Charm and I were "introduced" to each other on these forums after a communication issue led to a duel of wits. The "discussion" got to a point where Brian had to shut the thread down, it really was comical in a cutting, sarcastic kind of way.

Last month I had the privilege of staying with Charm and his amazing wife while on a mission for OCF and it really was like meeting family. What I would say is that we are an "acquired taste" due to our delivery of viewpoints and information, but when you get to know us and understand where we are coming from we can be quite endearing even though we're A..holes.

Don't be afraid of getting into a deep discussion on these forums and giving as good as you get, the only thing we ask is for quality of information. What you'll find is once you get past the crusty exterior there really is a heart of gold there, even if its cloaked in sarcasm and a minor disregard for personal feelings.

Eric

I LOVE you guys!!!!!

The first forum I actually participated was a college admissions site when I was doing research for my son. It would get pretty heated when the discussion meandered into politics. Had to keep telling myself ... don't take it personally.

As someone who actually has HPV positive cancer : HPV16, this thread is addressed to me. So in summary of this thread: there is zero evidence that the HPV vaccine increase cancer in anyone who has HPV16 already. The only claims were made 5 years ago in an FDA petition that was exposed as false and statistics manipulated. Two courts agreed with the FDA that there was no such evidence, Unfortunately, some newspapers and internet columnists still report the unfounded allegations of 5 years ago but that's why you read the OCF news feed instead. So the good news is that if you are thinking of getting the vaccine for yourself or your child, there is no scientific or rational reason not to.

Charm

(OCF Note: There are some contraindications that impact a few individuals, so please discuss everything with your healthcare provider before being vaccinated.)

I would like to thank both KLO and Maria for all the backtracking to get the story right in this thread. You have done a great job of it. It is very important that we do not let misinformation live on the boards, that we correct it when it can be known for sure what the right information is, and absent of that ability we must delete the threads.

The OCF forum is Goggled ( like it or not) and our discussions here can live in the cyber world for a protracted period of time. We never want anything misleading, or grossly biased, to stay on these boards; living on to hurt someone or to alter their ability to make sound decisions.

Both of you allowed this thread to continue on to help others, by doing the hard work of digging out the right answers. I would like to thank you for your time to do so.

There is a great deal of bad information on the Internet since it is the unregulated wild west of biased misinformation, outright fraud, and hidden agendas to sell, or convince someone of something. When information is brought to the boards from this open source, we all need to be vigilant to see that those was are all trying to help have it sifted for accuracy and vetted properly. MANY will come here and be offended by being challenged as they bring with them bias from the passionate and sometimes very convincing stories and bloggers they find in cyberspace. While we need to be civil, standing for what is correct is never wrong. Hopefully, people will appreciate the effort, though some will just move on to another venue where urban myth can thrive and their perspectives can remain unchallenged.

I have said many times that these OCF boards are NOT a democracy. But in order for them to function properly it takes people like the two of you to sometimes do the heavy lifting of finding the facts.

It is good to have information and not just from the manufacturers of a drug. I like the official government information based on scientific facts. Here is the Center for Disease Control take on the safety of Garisil as of 2012
CDC : HPV vaccine safe and effective
Especially important is this excerpt
[quote]Have FDA and CDC changed their recommendations for the use of the HPV vaccine based on their vaccine safety monitoring?

While no vaccine or medicine is completely without risk, CDC and FDA have reviewed all of the safety information available to them on Cervarix and Gardasil. Based on this, CDC and FDA have determined that Gardasil is safe to use and effective in preventing 4 types of HPV.

CDC continues to recommend the vaccination of 11 and 12 year old girls with 3 doses of vaccine to prevent the types of HPV that most commonly cause cervical cancer and genital warts. The vaccine is also recommended for girls and women ages 13 through 26 who did not get any or all of the doses when they were younger.

Additionally, Gardasil protects males against most genital warts. This vaccine is available for boys and men, 9 through 26 years of age.
[/quote]

While we all can have our opinions, it's good to have facts
Charm

Rather than OCF or posters putting out all the contraindications for this vaccine or any other drug, I am just going to say, that the decision to vaccinate or not should be made IN CONJUNCTION WITH AN INFORMED DISCUSSION WITH YOUR DOCTOR AND CARE PROVIDERS. We have already stated that it is approved for boys via the CDC, and that none of the adverse events that have occurred related to this vaccine can be directly tied to the injection, and do not occur at rates higher than in any non vaccinated population. I do not wish the OCF boards to degrade into a discussion of the pros and cons of an given drug let alone this vaccine. They all have potential downsides. To have non science people debating what is on the adverse events list or in the FDA events reporting system, only fosters misinformation. This may not be poster's intent, but it is the ultimate outcome.

These boards were not designed for this, they were designed to help people in the battle of dealing with the disease. Issues related to prevention are part of OCF's mission, but that work is taking place outside the discussion forums. As we have news or outcomes like our successful dialog with the CDC last October that allowed boys to be vaccinated and pediatricians to talk about oral cancers, we will post about it on the web site and in our Facebook pages.

These last two vaccine threads have taken too much time to moderate, (I have gotten over 20 PM's related to them which all require long answers) and I cannot be in the middle of a discussion about something that the answers for are not completely available (or known) yet, nor explain to people that do not understand the workings of the drug and vaccine approval system in the US, why the situation is the way that it is. We allow some discussion of it here in general, but overall, to dissect the adverse reaction list in detail and more is beyond the purpose of these forums, and takes the discussions and the moderator admins time away from helping people that are in the middle of their battle right now.

If you do not understand the vaccine issue, PLEASE DISCUSS IT WITH YOUR DOCTORS. We are all not doctors, but survivors with varying degrees of information about all this. The answers that you get here may not apply to you, and may not offer you a complete picture of your individual situation as it relates to this vaccine or any drug in particular. They may be given by a person that is repeating information from a source outside of OCF that we cannot control the accuracy of.

OCF is a proponent of vaccination against HPV16. Having said that, while we are talking to and working at the NCI/NIH/CDC to further the knowledge of things, only recently have any of the oversight and pubic health agencies taken positions that allow boys to be vaccinated, and consider doing a head and neck based clinical trial. To let this discussion here continue in a manner that does not include all the science, express the completeness of the issues with the CDC, the FDA, or with various other entities, in the end does not put useable information in anyone's hands if it does not come from these sources.