Hi everybody!

I have "irritation" and a feeling of something stuck at the back of my throat on the right side for a few months. I see a tiny growth at the very far back right side of the tongue (BOT) just below the tonsil. Saw ENT and had a scope done, they are not concerned. Think it is a papilla or lingual tonsil. As far as I can tell, no enlarged neck lymph nodes.

Since the feeling has not gone away, 2 days ago, I went to a dentist who offers oral DNA testing for HPV. If positive, I will insist on a biopsy. My concern is, I do not know how good this testing is and what do the members on this board recommend?

Pursue it until you are satisfied and have a multiple opinion that is consistent. Take no chances! My first diagnosis by an ENT was way off base. Thank goodness I found an oral surgeon (Practiced with my dental group) that was persistent but even the first couple of biopsies were negative! Once he figured it out he got the ball rolling fast with some great Doctors. Best of luck to you and keep us posted.
Steve

If you have a sore in your mouth that has been there for 2 weeks or longer then you should get checked by a medical professional. A biopsy is the only way to tell if what you have is cancerous. Find yourself an ENT or oral surgeon who is familar with treating oral cancer patients. If a biopsy is done then that tissue can be also checked for HPV. Being HPV+ does not mean you will develop oral cancer. Your BOT isnt something visible to you.

Thanks

Has anyone heard of this "Oral HPV screening test"? They make you gargle and swish a small amount of salt water for 30 secs and then collect it in a tube and send it for a DNA test.

See this thread (which links to a longer thread) for a discussion of the oral HPV test.

a lot of confusion here regarding the oral HPV test. I have to agree with Brian that it has no place as a screening test, but it may be of value in someone like me who wants to base his decision to biopsy or not on the outcome of the test.....

Also, I am amazed that given the preponderance of so many HPV+ nonsmoker, nondrinker SCC victims on this board, even in the year 2012 there is not a more widespread, nationwide effort on educating young people on risks of oral sex or even kissing.

There has been lots of news story coverage of all this in major media, each time as one of the research papers we have been part of sponsoring has been published, and of course in our TV PSA's with Blythe Danner and Jack Klugman. But at the end of the day, we are not going to do anything about the incidence rate of this in our generation. We have a published paper in the last 6 months with the NCI as our co sponsor looking at 2020 and the number of HPV+ oral cancers is going to be much worse - there is nothing we are going to do about that. We might be able to get earlier discovery to take place (that is both a professional and public problem) and that will make some progress against the death rate, but it is going to take another generation or two to really see the incidence number drop. That will be because enough people vaccinate their kids, male and female for protection from the HPV16 virus, and they never get HPV+ diseases at all (oral, cervical, anal, penis, and potentially others that we are just beginning to track and explore).

But you are not going to get people to stop kissing or having oral sex, that is not realistic. Also keep in perspective the total incidence rate of the disease in proportion to the population; it is small, and from that total, that 50% or so are coming form the virus. The odds of being one of the unlucky chosen ones like me, are small overall. Besides, prohibition of anything has never worked not in alcohol, drugs, prostitution, and certainly not in what is essentially a normal physical activity. Since men are the majority of those diagnosed, "protection" would involve using a rubber dam or something similar when performing the oral sex act, and that isn't going to happen either, it's not as simple to use as putting on a condom.

pulitzer, I think you need a second opinion from a multidisciplinary cancer center head and neck professional. I think you need that not based on anything that the HPV test tells you, because, it will not help discover an infection that is significantly below the surface, but because of your verbal complaint ( that a good doctor should pick up on in an oral history and symptomology taking).

The early finds that we are making are based on things far away from dna tests. The patient complains of difficulty in swallowing, a hard, painless, fixated node is found in the neck, when looking at the trigome (the shape formed by the two tonsillar pillars and the base of the tongue) it is not symmetrical (very indicative of tonsillar cancers). These require an informed professional screener that is both listening (and asking the right questions) and looking, combined with an aware public that knows the early signs and symptoms that are mostly painless, so they can self-discover and get in for proper exams early in the disease process.

That is the mantra that OCF has been on for more than a decade. We have been at the leading edge of this call to action, and had we had any significant funding a decade ago, this would have been in the public's awareness sooner, and would have had more involved and knowledgable professionals on board long before now. The data was there. We have helped pay to get the science done. Its distribution to both medicine, dentistry, and the public, championed by a very small non-profit (OCF) took far too long, though we have given it our best given our limited resources both human and financial.

I can remember standing in the office of a top dog at the NIH in 2001 begging for someone to pay attention, in the same year talking to a top epidemiologist at MDACC who had national visibility to buy into the paper published in 2000 about HPV, arguing with the top oral cancer person at the CDC in 2002 when I sat on their oral cancer task force, and many more such frustrating experiences that yielded little more than condescending answers. Now that many high end institutions and researchers and other bigger non-profits are finally "getting it", OCF's part in all this is largely forgotten.

But not by the primary researcher that I am proud we helped start on her path, Dr. Maura Gillison, who is today considered the most published and knowledgable person about all this in the US. We are still partnered with her again in 2012 in a clinical trial on treatments for HPV+ oral cancers.

You do what you can with what you have. Sometimes that is just not enough. It is still a daily source of frustration, that there are dentists and ENT's out there that are oblivious to the fact that HPV16 is a huge problem in the oral cancer issue. Doctors that are years out of date on what they know, and therefore how involved they are in screening, or actually involved in the discovery of something at an early stage. Somedays, you just want to slit your wrists when considering the resistance to change in our dental and medical world.

Your symptoms are like Kevin's. He waited 2 months because he thought it was nothing, then when the first lymph node got large and hard as a rock he still swore it was nothing. He waited another 6 weeks or so before he told me about it.Then I KNEW. He had so many of the other symptoms of OC. Clearing his throat, ringing in his ear, slight hearing loss, feeling like he had something in his throat...by the time I insisted he see an ENT and we started tx it was stage IV. I was ticked. EVERYONE kept saying he didn't smoke, he didn't drink, they didn't see anything in 2 scopings so they just didn't think it was cancer. I said let's just do a biopsy and see if it's ok. The ENT called me 2 days later and said it was SCC. He was SHOCKED!! They did a PET and surgical biopsy and off we went.
All this to say...don't wait. Get a second opinion. When they sent Kevin's biopsy away and had it tested for HPV..it took weeks. I think we found out about 5 weeks later. I've not heard of the saliva thing. I'll check that out because of curiousity, but, say to you...."get a biopsy"!! Just my thoughts!
Keep in touch,
Kathy

Thanks, I have an appointment scheduled with an ENT physician this Thursday - most of his practice is head and neck CA. He may be more likely to biopsy anything he finds suspicious. The problem, as I see it, is that in a majority of cases on this board - unless there is an enlarged lymph node, there is often nothing to biopsy inside the mouth or tongue - especially for HPV+ tumors which tend to hide deep inside the tongue or tonsils, not visible to the eye. Brian wrote to me that of the many hundreds of cases very very few are diagnosed in stage 1 or 2.

So many members on this board had initial negative scopes and biopsies till they started to have enlarged nodes and then were found to have SCC when the node was sampled.

This cancer is one wily sucker. Also, my Oral HPV test will also come back this Thursday, not that I am going to put a lot of weight into it, unless it is positive, in which case, will have to go for the whole hog - biopsy, CT, MRI or PET.

Just as a side note, I have had tinnitus for the last four years but I think that it too long for it to be latent OC. My father also has tinnitus - so it is likely some genetic thing. It was very annoying at first but you get habituated to it in a few months and it does not bother me if I don't think about it.

Hi, pulitzer
My husband's FNA biopsy of his lymph node showed necrotic tissue, but not the cancer on the interior surface. The initial CT just showed the node. Fortunately, our HMO ENT was suspicious and escalated him to a Metrohealth doctor, who ordered a PET - that showed the tonsil tumor and the node. It is pretty scary that the initial test were negative (and a surface biopsy would have been, also). I am very thankful for the doctor's suspicions and skills!

The takeaway point seems to be, if things don't seem right and the initial biopsy is negative, insist on a PET scan.

This statement is counterintuitive.

"Also, my Oral HPV test will also come back this Thursday, not that I am going to put a lot of weight into it, unless it is positive, in which case, will have to go for the whole hog - biopsy, CT, MRI or PET."

If the test isn't going to weigh much on you, then why would a positive cause you to throw the kitchen sink at things?

You may find there is nothing to biopsy at this stage, so I suppose you could ask for a PET/CT, but my guess is you will have to private pay it as our insurance will likely turn it down without some strong suspicion from your doctor that he is not on a wild goose chase. Your direction is really going to be dictated by one thing - you are seeing a doctor that has experience with these very hard to discover cancers.

I hope you get an answer.

My cancer was found at Stage I twice. I had a tumor inside my cheek. Your assumptions are not correct. There are many people who come to this forum with a suspicious spot inside their mouth. Of course not all are cancerous but sadly many are. If you have spent any time reading this forum Im certain you would have come across many posts by people who were new and afraid. Their fear was due to having a 'spot' inside their mouth weather on their tongue, cheek, or back of throat. Take a look at the signatures, Im sure you will see several Stage I and II's. I hope you do follow thru and get yourself properly checked out on Thursday. Best wishes!

"The takeaway point seems to be, if things don't seem right and the initial biopsy is negative, insist on a PET scan."

Not necessarilly, but that's where the doctor's expertise comes into play. That is why there is so much emphasis on this forum about seeing a doctor experienced in oral cancer that you can communicate effectively with, and on having any treatment evaluated by a team.

Well put Maria!!

Hi there - usually a scope would pick up base of tongue cancer unless it's tiny - I could be wrong but most HPV + cancers are found in the nodes first because the patient remains asymptomatic - not because a scope missed something. So he'll probably suggest a scope and if here's anything suspicious he'll schedul you For a biopsy... Good luck!

The ENT does not want to biopsy anything - thinks it may be laryngopharyngeal reflux, but is happy to see me back if I continue to have symptoms after 4 weeks of antireflux medication.

This board if full of incredible people who go above and beyond anything I have ever seen.

The oral test was negative for what it is worth.

thanks for all your comments

i too have had those back of the mouth ache or geez i never felt this before anxieties. i have had biopsy after biopsy, but some of what i feel is side affects of rad treatment. every day is a new challenge, no?

Definitely everyday is a challenge - I feel good - however there's always that what if... So I get it! Pulitzer - so glad things are good for you!