If the Primary is caused by HPV then the mets to the nodes will also contain the genetic marker. Only my node cells were tested as my Primary was found later.

In my case I had no symptoms other than a slightly swollen non painful neck area almost as if I had worked out only one side of my neck muscles. I noticed it one day while shaving. I did the typical male thing and let it go for about a month and then I casually mentioned it to my wife one morning and you would have thought the world was coming to an end. I still fought her until it was finally confirmed cancer so I guess wives are good for something. LOL

MSG, I'll side with Brian -- You need to stop worrying about where 'whatever it is' came from and find out what it is (what difference does it make whether it's HPV, cigs, booze, irritation, or little blue men from another galaxy?) -- Deal with it -- Wasting precious time, otherwise.

Were I you, I'd go back to Doc and demand referral to ENT or oral surgeon specializing in cancer diagnosis. Dunno if you are in CA as in Calif, or Canada, but there's plenty of cancer talent in both places, you just need to get to it. We can all sit around the cracker barrel later speculating where it came from after your biopsy reveals what it is.

MSG,

There is no substitute for a thorough visual screening. Check out www.velscope.com for an adjunct to, but not a substitue for, a good clinical eam.

Jerry

By the way, folks, I have discovered an oral test for HPV via PCR testing. 100% specific, 99% accurate. It's called the OneSwab, and the test number is 140, at www.mdlab.com. It's not covered by insurance, but it's only $140 to test. I think the sample has to be collected by a physician.

Much thanks for the heads up, Jerry. I'm aware of the VelScope and Vizilite exams, but i've read that they report too many false positives, and sometimes enough false negatives to warrant skepticism.

By the way, how was your tongue SCC found? Visual exam?

The link is bad in your posting, but that is academic since you can do a Goggle search and find tons of labs willing to do PCR tests for anyone - including the public. But more than that, the test is only looking at a site that you choose to swab, and the cells that happen to get picked up in your swab, which may or may not be representative of the tissue in question. Which anatomical site are you going to swab? If you swab more than one site, say the right tonsillar pillar and the right cheek, and you get a positive back, which site did it come from? Don't know. So let's say you only do one site, how many 140 dollar tests to isolate all the possible locations in the mouth are you willing to pay for?

We are seeing many tonsillar cancers which appear completely occult in the oral environment even when a positive metastasis to a cervical node has been identified. These are predominantly HPV related. But tonsillectomies on these patients (and there are a ton of them) find SCC inside the tonsil..... nothing on the surface. How does that work with your surface swab idea? It does not. All cancers start in the basal cells, deep below the surface. One of the things we are finding about HPV+ cellular changes, is that they too start deep in the tissue in the basal cells, but unlike the normal cascade of cellular events that ends with a migration of the cell to the upper epithelium where it produces a visible lesion or precancer, HPV+ cells do not in many cases. This essentially means that there is right now, no early detection for these cancers in the oral environment like there is in tobacco etiology OC. This is a huge problem. One that in those of us who cannot be protected by vaccination, there is no solution for today.

Polymerase chain reaction (PCR) is done by a ton of labs. But the interpretation and collection issues are complex. Your 140 dollars may not buy you anything useful, and were you positive for HPV, the question would be what does that mean to you? It is the PERSISTENCE of infection that puts people at risk for malignant development, in cervical or oral cancer. So a single capture / slice of time result isn't necessarily of any value. Your immune system may deal with it. We (medical science) do not understand the complete life cycle of HPV 16 to the extent that we need to, to make intelligent recommendations at this time. Believe me we are working with the company that has the only FDA approved HPV test for cervical cancer to create a panel for oral HPV detection. These guys are brilliant, and it is not as simple as getting a PCR test.

MSG,

As Brian and I and many others have stated, there is no sustitute for a complete visual oral cancer screening. The use of the VELscope is an adjunctive screening device and has the potential of finding precancerous lesions. Yes, there are chances for false positives and negatives, but I know how I would feel if one of my patients developed OC and there was even the remote posibility that I could have caught it before it turned to the dark side.

My SCC was found by me and was biopsied in my office by my oral surgeon. The VELscope was not around at that time and perhaps if it had been, it might have been caught earlier.

Jerry

About the VELscope without endorsing anything.... This is a device that finds loss of fluorescence in cells. There are many reasons for that. Some of them are cancer, some are bacterial, fungal, or viral infections, some are from trauma. IT IS A MULTI-USE DEVICE THAT IS NOT SPECIFIC FOR CANCER. So those are not false readings, they are readings that require someone who is using it to interpret.

Oral cancer diagnosis is preceeded by DISCOVERY by someone of an abnormality. Whether this is done with a eyeball and wet finger exam, a device that looks for loss of fluorescence, or whatever; no discovery of suspect tissue = no diagnosis. Additional tools which compliment the mark one eyeball we were all issued with, are additional data points that an examiner can use to decide if what they have found is worthy of further exploration. There are many data points that lead to that decision making and possibly differential diagnosis. Some of them are color changes in the tissue, texture change in the tissue, loss of fluorescence, loss of heterozygocity, ploidy of cells, presence of certain protein markers, presence of certain RNA markers etc. Oral cancer discovery and diagnosis is not accomplished by devices, it is accomplished by educated observers whose discovery process leads to the gold standard biopsy for confirmation. Are some devices and data points more indicative than others, yes, but they are all used in a synergistic manner to make decisions. No ancillary device by itself is worth anything if wielded by someone that does not know what they are looking at. Dr. W's point is what we are all talking about - get an exam from a competent professional. The rest of this discussion you are driving on the forums is a mute point until you know something basic about your own situation, and that something is not going to come from internet discussion forums.

Re-reading the previous post about false positives and negatives prompted this reply. But since you have stated it in your post, please tell me where you read about any false NEGATIVE with a device like the VELSCOPE. I would like to read the source of this comment. If it is based on your opinion - like your previous statements about how many women vs men have oral sex with the opposite sex, (which you pulled out of some dark place) I would like to say that I think that discussions based on facts serve a purpose. When they are scattered with unsubstantiated opinion they begin to fall into the realm of -why should anyone waste the time to reply?

For the last time, get a diagnosis from someone competent to give you one. The board is not designed for academic discussions, but to help people that are having a problem. When you have defined that you actually have an oral cancer related problem, I believe that you will find people here very helpful. But this continuous dialog about the what if's of HPV is becoming non productive, time consuming, and is outside the purpose of the forum.

I would encourage everyone to start asking questions to their primary care givers. The internet, including this site, is not the place to pump the information found in the popular media.
Attentive, intelligent and supportive professionals can be found to provide guidance for may inquiries but, to reinforce Brian's comment, this is not the site that stamps all new products for diagnosing OC and probably never will.
I have to encourage everyone to pay attention and make decisions based upon the information provided to you from the doctors caring for you. Every doctor has had different experiences treating patients and has different tools in his/her tool box so will offer different treatment advice on occasion but, I suspect most if not all of these doctors are familiar with the standards of care for the conditions they are presented with and if not will certainly refer all patients to a capable colleague. If you are not happy with the answers ask for a second opinion.
Mike

Alright guys. I'd like to thank everyone for all of the helpful responses. I've realized now that i've taken away valuable resources from this board in the pursuit of my recent fixation with HPV. Let's consider this matter squashed, and again, sorry to everyone for having to deal with my neuroticism.

I should like to add to Brian's comments about the eyeball and finger as primary devices, my first cancer was a no-brainer -- A tumor started growing on the outside of my tongue.

However, the second cancer was different -- My tongue gradually started swelling very slowly and I finally went to see my ENT about it -- He did some feeling around on the front of my tongue and didn't like the density of what he was feeling, so he did the punch biopsy with came back positive for SCC (despite previous radiation and a year-old clean biopsy from the same area).

Get 'er cut and displayed in the microscope!