Thanks for the response David and will do.

Thanks Kelly for the very positive and informative response. It's funny you should say that about the Papillaries, because mine are on both sides of my tongue. They are rather large though. Since I never used to look so far back in my mouth, I have no idea how long they've looked like that. I feel like I'm on a very up close and personal basis with my mouth these days. I agree that I was way over the top. I'm still extremely worried, but will do my part on being proactive and lean on my faith in my maker. Like you said before, we are parents and that is another beast entirely. But I agree, one day at a time until I know something definitve. I love the saying, " Overprepare, then go with the flow."

Sherrone -

Your quote from your ENT says one thing very clear that that doctor is at least 9 years behind what we know about this disease. The nail was definitively put in the coffin of HPV16 being an independent and unique etiology for posterior of the mouth oral cancer 2001. Peer reviewed published and confirmed since then by multiple other state of the art institutions and researchers. Given that off the mark "gut" feel about anything that is biologically going on with you, I would not put a lot of faith in that doctor's opinion. More so, why is the ENT not doing a conventional biopsy? They are trained to, and doing brush cytology instead makes me wonder as well.

As to the rarity of this situation, I will offer you the most recent news release on this in the OCF news site, which quotes Dr. Marshall Posner of Dana Farber Cancer Center, someone that I personally chose as an individual to send a dying friend to for a Hail Mary procedure (you can see the level of trust at play in his knowledge) as saying that the HPV16 oral cancer situation is now, in his mind, "epidemic" (his choice of words) at about 20,000 oral cancers in the US in 2010. That would be about 48% of all cases. I think the horse is way out of the barn on oral cancers and HPV being rare.

As to the comments on intensity, you can be thorough, urgent, but in order to keep things in perspective for any mental well being, proportionate to the facts on the ground. Leave that realm, and the people you need to understand and believe in you (to make good clinical decisions) start to discount things as emotion rather than biology, and feel that the patient may be overblowing the facts.

Brian,
I totally agree with everything you just said. I have calmed way down because i realized that no one would take me seriously if I continued to act this way. It surprised me as well when he chose to do A CT scan first instead of the biopsy. This was not a small town little ENT either. I live in Dallas and went to a large teaching hospital. As soon as he started speaking and discounting proven medical research, he kind of lost me. If he didn't at least think there was something there, he wouldn't have order the CT scan. He's not even doing the brush biospy, my dentist is going to do it today. I think I will ask her opinion on just doing the regular biospy. The white spot isn't very big and both she and the ENT agreed that it was abnormal and could see no reason for it to be there. I hear what you're saying about reigning in the crazy Brian. What's so funny is I'm usually emotionally stunted and underwhelmed to say the least. I'm a young professional that favors logic usually over emotion. The thought of not being around for my kiddo....well all rationale went temporarily out the window. Thanks for your response. It really helped to keep things in perspective.

Sherrone,

That's the problem I encountered 4 years ago and it's still prevalent and that is there is way too many ENT's and front line practitioners that are not "up" on what's been current on the oral cancer front for years, especially regarding HPV's proven connection.

While smoking and tobacco use has been on a steady decline for the past 10 years we have seen an increase in oral cancer cases and that increase has been associated with HPV related oral cancer. We are also seeing what I call a new patient type and that is one that is a non smoker, younger than the HPV types but they are not HPV+. Especially in the U.S. these 3 categories pretty much make up what wee see today in oral cancer cases.

Brian,

Thanks for the update but I totally agree with you as to it's value. What are they supposed to do with the finding? Maybe I'll develop an Anti HPV rinse that I will claim will kill HPV like Listerine claims with bacteria.

David.... I want in on that one...

But seriously, Sherrone, you're getting great advice here and I'm just chiming in with support. I can't imagine why your ENT made that statement since from everything I've read - and what my own UCLA professor MO told me - indicates that the jury is very much in on the HPV link.

Good luck today and keep us posted.

D2

Actually Listerine does have a documented very high kill rate. Of course it's 25% alcohol, so that is no surprise. Rinse your mouth with very dilluted bleach and you will have the same out come with apparently little damage to your tissues (I"m not recommending it, but a doc at UCLA has recommended a limited use of it in patients with rampant perio disease to get things under control immediately. But with both ideas, besides killing the bad bacteria and flora, it also kills all the beneficial bacteria and flora that keep things in balance in your mouth. It's a scorched earth (using alcohol) policy, and in most things that isn't a great approach.

Aw but is it profitable?

So dentist decided not to waste time with brush biospy. She referred me to an oral surgeon and that appointment is tomorrow afternoon. This is so nerve racking. I'm glad she decided not to waste time with the brush thing. She's very thorough and I trust her opinion. She feels I need to have it removed, so that's what I hope the oral surgeopn decides to do. Thanks for all of the great advice. Even if it turns out to be nothing, I will never be the same after this experience. I take so many things for granted. I'm 31 and used to always say I was getting old. I have come to the very firm realization that it's a blessing to grow old. I will never complain again. The research on HPV/oral cancer in my opinion is not made readily available like screenings for cervical cancer and mammograms for breast cancer. I never miss my yearly exam....ever. If my dentist had not found the white spot, I would still be in the dark about everything. That's a scary thought because people don't know that they are supposed to be checking their oral cavities. Besides my tonsil issues, my mouth is in pretty good shape. I always get my teeth cleaned every six months and even had my kiddos teeth sealed to prevent cavities. When I thought of oral health, I thought about not getting gum disease. Like I said before, I'm so scared for the people in the world that don't know they are supposed to be screened for oral cancer. I'm also at a loss as to why the oral cancer campaign isn't as aggressive as other cancers. Especially since the survival rates of cervical and breast are reported as statistically better. I'm glad I'm educated now, and I will never be the same again.