Does anyone know if it's possible to get an oral HPV test like the digene test? I wonder if the same test can be used in the mouth. I've read some studies that have used this method, and also an oral rinse method. Does anyone have more information that could shed some light on this?

I am not aware of any test currently being used to confirm HPV orally other than a biopsy.

You seem to be really fixated on HPV, even more than me which is way out there, and I more than anyone wants the public awareness on HPV raised to the 10th power but certainly not even a small percentage of the population that is exposed to the virus ever ends up with cancer from HPV so calm down a little. Maybe I've forgotten but what are you doing about getting your tonsil and throat looked at?

There is no oral test right now though one is in progress for availability hopefully through the FDA in late 2009. OCF is working with Digene (actually their parent company in Germany Qiagen) Even with this test which will look for high risk versions of the virus, 16,18,31,33,35.... it does not mean you will develop cancer if you get a high risk version from the 120+ possible versions that we know of out there. Many people's immune systems deal with this quite successfully, and you may be one of those.

Women can get a test when they get their pap smear, which is essentially brush cytology, and a second test for HPV done on the same sample, and the CDC is recommending it. But for guys, there is no test availble in the near future. When Daivid of all people says someone else is obsessing over this, he is usually right. I would listen to him.

Lastly, not to hijack the thread, David if you want to call me on the phone I have some HPV information that I cannot release to the public yet from a study that OCF sponsored with Gillison at Hopkins that the results of will interest you, and keep you up to speed. It will be in a major cancer journal in the next 3 months or so and everyone will know this, but I know what this information means to you.

By the by, the thinking among some prominent HPV researchers now is that even more casual contact can transfer the virus to the oral environment, so oral sex may not be as big a story in the future as it has been.

Over a year ago a HPV researcher from Moffitt told me that HPV is one of, if not the, most contagious virus' known to mankind, even more so than HIV. She also said that one could transmit it orally by kissing or even touching the inside of your mouth with your finger. She said oral sex was, in her opinion, only one of the ways to transmit it to the oral cavity.

And yes, I'm sure this site would have never thought that I would have told anyone to calm down over HPV but there is a first time for everything. Guess I'm getting old.

And thanks Brian I'll take you up on the info as soon as I can catch you.

I'm betting that's why my RO told us, well it was us then , LOL , that no kissing for at least 6 months. I iwhs they had given me a name for my OC beside that it was a unique type.

The RO was worried about conventional bacterial infections when your are immunocompromized from the treatments and have open sores in your mouth. Everyone has plenty of usually benign (in small quantities) harmful flora in their mouths. That is a bad time to get infections, but in general, since I have heard this advice before, it's a waste of words. When my mouth was bloody with mucocitis sores and I was spitting chunks of it into the sink on a daily basis, kissing was the last thing on my, and my wife's to do list.

And yes this is way easier to get than HIV, which is suprizingly difficult disease to get through any conventional means. HPV only requires the casual touch of skin against skin. HIV require a transfer of fluids, saliva, blood, semen and even then it does not live long in those environments. Where it gets a quick hold is not so much from infected blood touching you, it is infected blood getting into your blood stream. Think transfusions, think a sexual act in which surface pressure tears, no matter how small, allow it access to your blood stream. That's why HIV positive people are no longer biological pariahs in schools or society in general. I can remember when people were afraid to shake the hand of an HIV patient. This is BS. They will not give you the virus by such a simple act. Ignorance emotionally hurt many people.

David and Brian,
I appreciate your interest in staying current with research advances dealing with HPV induced cancer. I received confirmation from Johns Hopkins in the last week that my cancer was caused by HPV-16. Gillison had the lab test my tissue block for HPV-16 first because "95% of all SCC is caused by HPV-16" and that test came back positive. I didn't ask her, and hesitate to be a pest, if it is possible to have more than one strain of the HPV virus. Are you aware if anyone is ever tested in this manner? I realize this is likely more of a curiosity than of any clinical value but I have been trying to hypothesize as to why so few have HPV-16 actually turn to SCC. Also, I am very interested in understanding the research advances that apply to HPV induced SCC, especially research specific to HPV-16. What do you feel is the best way to stay current on these advances?
Thank-you

It is possible to have more than one strain of the virus, but in oral cancer, #16 is the bad guy. So to screw up your mind a bit further, there are even subsets of #16 (about 20) with varying degrees of impact in all this. But going into this serves no purpose unless you are a researcher.

What makes you think that so few that have version 16 develop oral cancer or other related cancers? There is NO data on this, though we know for sure that some have immune systems that deal with it. But actual statistics on how many? Not anywhere to be found, and not known to anyone.

95% OF ALL ORAL CANCER IS CAUSED BY HPV 16? Gillison did not say this - you misunderstood. I talk with her all the time, and is this is nowhere close to her take on the situation.

OCF is a financial sponsor of Maura. You will see her work published, and immediately when it is, you can read the synopsis on the OCF news or download the entire scientific article off of our OCF HPV page.

Frank,

I have never seen anyone's path report on HPV come back identifying more than one strain of HPV so I don't know if that's probable but I have seen other than 16 being identified with SCC but as Brian said 16 is so far the No 1 villain in OC.

Yes 95% must have been misheard. The most recent statistics I have heard is that up to 70% of new oropharyngeal cancers are caused by HPV most commonly associated with the tonsils or base of tongue, white males, non smoking, casual drinking, college educated and born after 1948. Usually mets to the nodes are also common before they are diagnosed.

I too hope researchers find out why 80% of the population by age 50 have been exposed to the HPV virus yet so few as expressed as a % develop cancer. I was told my immune system must have blinked and let the leash on the dog go and Johns Hopkins is doing a trial on the effectiveness of boosting the immune system's response to post HPV exposure so lets hope they can reach a positive conclusion. But all types of cancer seems to be a mystery otherwise everyone that smoked would get cancer, etc.

Thank you guys for your responses. I'm very much aware that i'm a hypochondriac, and worried about this virus. I've given it much thought, and have done lots of reading, but, i'm ultimately looking to be more proactive with screening, etc... Even though our immune system may deal with it in the time being, from what i've read from other people and their experiences, HPV never goes away. It can flare up even 20 years later.

Much thanks for the help and advice guys. I really appreciate it.

By the way, i'm going to see my primary today to get referred to an ENT. I've already seen one two weeks ago, but my symptoms have been persisting with the new medication. I've been looking at my oral cavity to look for changes, or abnormal lesions. Which brings me to my next question:

Do you guys know of any good way to do screening for oral and throat CA? Is visual the only way?

By the way, Frank, I live in the Bay Area too. How was your CA of the tonsils diagnosed? Did the tonsils look different? The tonsil on my left side looks different than the one my right. I'm waiting for it to get looked at by an ENT.

Brian/David,
I mispoke and stand corrected, the proper quote should have been, "Of the HPV-induced oral cancers, 95% are caused by the HPV-16 virus." Do you agree with that? I do not claim to be the expert and am thankful that they exist on this website and in the world of research. Wow! Twenty subsets of HPV-16! I am an engineer by training so you shifted me to another gear of potential analysis. But, as you point out, there is no current clinical relevance.

With regards to my assumption that so few of those that have HPV-16 develop SCC: Again, thank-you for correcting me. I was thinking that such a high percentage of the population has HPV and with only 30K new cases of SCC per year, the percentage is very low. But after your input, I realized that I have never seen any data that would give me the percentage of the population with HPV-16. This is certainly different than the percentage of the population with any strain of HPV. It would be interesting and educational to better understand these facts.

I plan one day to thank Dr. Gillison in person for the research she is doing in the field. My brother is an interventional cardiologist at Johns Hopkins and I will be in Baltimore visiting him sometime in the near future. Brian, would it be appropriate for me to offer to buy her lunch out of gratitude for the work she is doing? I don't want to unfairly impose on her time.

MSG - My SCC was diagnosed when a lypmh node on the right side of my neck was removed. It was swollen and was causing a visible lump on my neck. This was a metastisis from the primary in my tonsil. There were no visible signs of SCC in my tonsil but it did show as "slightly hot" in the PET CT. The primary tumor in my right tonsil was only 8mm when it was removed with clear margins.

I am not knowledgable on screening methods. I defer to Brian and David.

This has been a great site for me through my journey with SCC. Thank you Brian.

Wow, so, there is no way to diagnose tonsillar cancer besides mets to the lymphs? That's pretty drastic, no?

I have read much on HPV, and from most studies, it is determined that half the population has some form of HPV, and a quarter has an oncogenic type. Based on studies done on university students, the percentage of HPV16 and 18 types that were found in new infections were 38%. Based on some inference, I would say that 25 million people have had some exposure to HPV 16.

I've read that one major risk factor for nasopharyngeal cancer is EBV virus. The CDC states that 80+% of people over 40 will have been exposed to EBV, and that it is lifelong. But, NPC is really rare in the U.S. In SouthEast Asia, though, it's very common. It's the number #1 cause of neoplasm in China. No one knows why, but some speculation is because of genetics. I've had a friend, who grew up in Taiwan, unfortunately recently passed away from NPC. She was 7 years with no recurrence, and then 3 years of fighting it again. It makes me wonder if HPV is similiar in this aspect to EBV.

My husband's tonsillar/base of tongue (primary tumor) was caused by HPV 16. His diagnosis was made by doing a biopsy of that area (even though he had one lymph node that was positive on a CAT scan, his lymph nodes were never biopsied). The goal of the biopsy was to find the primary tumor site. He had no "traditional" risk factors for oral cancer so after reading research we quickly came across Maura Gillison's work and thought it likely that his was caused by HPV 16 (although in many ways he doesn't fit the "profile" for the typical person with HPV 16+ oral cancer). He was treated at Johns Hopkins and we requested that the biopsy material be tested for HPV although I think it's become pretty routine at Hopkins.

He did have a significant life stressor (long, protracted death of his mother where he was her primary support) a few years before he was diagnosed and we've often wondered if that was when his immune system "blinked" (to use David's term). Given our long history as a couple, he's (or perhaps me?) either harbored the virus for many, many years or he acquired it from non-sexual contact.

David. 50-80 exposure is true (CDC estimate) but how many of those are a high risk version ( potentially malignancy producing) of HPV is unknown, and more unknown is how many of those with a high risk versions will actually get a malignancy.

The re quote of the vast majority of all oral HPV tumors being version 16 is accurate.

While I talk with Gillison often, others interactions with her are up to them to make the contact, and up to her to accept.... so if you feel moved to say thanks please give it a try. Overall I can tell you that she travels a lot, and even when at JH is extremely busy. Even getting her on the phone can take persistence. There are also issues with her dialog with people that are not her patients or potential patients. JH is pretty strict in their policies. But as with all things in life, nothing ventured, nothing gained. If you want to get an email to her I would be pleased to forward it, but she is unlikely to reply if it is full of questions.

Immune system blinks. People, based on genetic history, are either predisposed to be protected from or susceptible to things, getting a cancer for instance. My genetic predisposition to getting HPV16 was likely ingrained in me (my inherited genome) long before I was exposed, and not a on/off issue with my immune system. For those interested in this, I highly recommend a very digestible and enjoyable book called Survival of the Sickest (use the OCF Amazon link to order an inexpensive copy for yourself, and help OCF out). It is a fact that with age the immune system does become progressively incompetent, but that is another issue. OCF Amazon Link

What kind of symptoms did he have?

Hi, MSG,

My husband's first symptom was a slightly painful, small lump near his jaw/neck (likely the cancerous lymph node). He reported it to his internist January, 2007 and she couldn't feel it. It really didn't get too much worse but by March/April but he was having soreness around his jaw and ear pain. He went to his dentist (who saw nothing), an oral surgeon (who noted slight thickening at the base of the tongue which should have been of concern to him as that can be a sign of cancer but wasn't - most likely because he didn't see him as being at risk) and then finally, in May went to an ENT who diagnosed him with TMJ (at that point he was in constant pain in jaw/ear and significant trismis). For some reason his ENT did not scope him and had he done so- would have clearly seen the tumor as we saw it 10 days later via scope at Hopkins. His ENT's notes said he had TMJ and my husband actually demanded an MRI which revealed a 4 cm tumor.
He did not have a sore throat at that point but did have some hoarseness, ear/jaw pain, an significant trismis. None of our doctors or dentists had any knowledge of the HPV connection and our dentist had no idea how to conduct an oral cancer screening. He felt so bad that he took a training session on oral cancer after that.

I may be somewhat confused, but concerning HPV (OC strains 16, 18, etc..):

Is it correct that to confirm HPV as the likey cause of OC the primary tumor must be tested for the presence of HPV?

And

There is a blood test for HPV that will show if a person is infected (like as for HIV and EBV), but this alone is not confirmational of HPV associated OC?

Also

Can a secondary "lymph node" tumor be tested for the HPV association?

thanks

I'm beginning to get worried. I mean, how does one get the diagnosis? I'm looking at my tonsils and the back of my throat, and it's looking pretty off. My tonsils look sort of bubbly.

My primary physician didn't do jack squat on Friday. I wanted a referral to an ENT. The problem is, finding an ENT knowledgeable enough to make a proper diagnosis.

Is there a way, besides biopsy, that they can check for cancer in the mouth or throat? They think my throat hoarseness and nasal dryness is due to acid reflux, but, I'm not convinced. Can I get some kind of soft tissue scan that might highlight SCC in my tonsils or back of throat??

MSG. You need to find a doctor that is going to determine if you have oral cancer or not. Forget all this dialog about HPV for now. It is not helping you move toward the place you need to be.

As to the other comments. People that have been exposed to HPV can have serology tests that will find an antibody for HPV if you have been exposed. That information today isn't of any value to anyone.

The only way to know if the lesion/tumor is of an HPV origin, is to test sample tissue from the tumor. It matters not if the tissue sample is from a primary site or other related SCC malignant tissues, they will have the HPV in the cells, and a PCR test will be the mechanism for finding it. After the fact (treatment etc.) nothing can determine this with certainty. But since today the treatments are still the same, this will give you some information, but not much that you can do anything with.

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!

As Brian points out and I know all to well I had no as in zero, nada, zip symptoms in my oral cavity to warn me or anyone like my dentist that I see every 4 months that I had anything suspicious occurring in my mouth. The only thing I first noticed one day shaving was the left side of my neck looked more muscular than my right side. No pain in my neck nor my mouth. No sore or raspy throat. No weight changes, no appetite loss, no energy loss, etc. I ignored my neck for about 3 weeks more before I showed my wife and WHAM, 2 months later I am a Stage IV.

Thankfully a recent study has concluded that HPV+ SCC responds better to Tx and (therefore) has a lesser chance or reoccurrence or I would have been much worse off. Imagine if all tobacco based SCC, which has proven to be a much more formidable foe, started off as Stage IV's.

A friend of mine locally discovered his tumor in much the same way -- He woke up one morning and the side of his neck hurt, so he went to Doc (Luckily, I would have put it off) -- Doc barely felt hard spot which was later determined to be SCC -- Don't know the stage, but they caught it early.

He and Doc said it was lucky he was slender because it was buried waaay in deep and might not have been found early had he been overweight.

SSC starts in the Oral Cavity and once it spreads to the nodes it is automatically Staged a IV.

unilateral spread to cervical nodes is 3, bilateral is 4. http://www.oralcancerfoundation.org/facts/stages_cancer.htm

Brian,

Then why do you think I was Staged a IV as I was told I only had 2 positive nodes on my left side?

Same with me David -- I had one clinicaly involved node, , between 2 and 3 cm as I recall,and one more that was microscopically involved.

I was under the impression that having more than one node was automatically staged IV, with size coming into play as well.

Don't get me wrong -- if you want to call me Stage III instead of IV, I ain't going to complain! ;-)

Seriously, I would be interested in seeing more on this.

Ditto

David - I said this wrong in the first answer. What I should have said was a single node does not put you into stage four. If you read the staging outline you will see that other things besides nodes can bump you into stage 4, along with multiple nodes. Some people have a huge primary and that alone is enough to do it. As the staging page says, this is only to determine possible guidelines (which are only a base line recommendation) of treatments, and a means for doctors to describe you to each other in a simple way.


Stage 4 - Any of the following may be true: The cancer has spread to tissues around the lip and oral cavity. The lymph nodes in the area may or may not contain cancer. The cancer is any size and has spread to more than one lymph node on the same side of the neck as the cancer, to lymph nodes on one or both sides of the neck, or to any lymph node that measures more than 6 centimeters (over 2 inches). The cancer has spread to other parts of the body.

You can see how generalized this is, (cancer has spread to tissues around the oral cavity--- how much spread, how invasive this is WAY generalized) and therefore far from a definitive description of what actually is the situation. TNM was developed as a better means to classify patients. Please also remember that this is not a universally accepted system, and is very general by nature. The TNM system is much more finite and used more when specifics are required.

Thanks.

Hi,

I need to chime in here.

I had an occult tumor, not visible with a scope or a mouth exam. The only indicator was one Level II lymph node that was swollen to about the size of a green grape. A biopsy of the node was suspicious for metastastic cancer. Surgery and a further biopsy confirmed scc and determined the right tonsil harbored a 8 mm tumor, hidden in the folds of the tonsil. I ended up losing the tonsil, a salivary gland, and several more lymph nodes--only the tonsil and one node was positive for scca. I suffered through IMRT, but now am recovering nicely (although I will probably never be the same, either mentally or physically).

After reading the thread above, my case is consistent with an HPV based scc.

My doctors never have tested me for HPV.

Should they? Or is it merely an academic issue? It may make me sleep better at night knowing that HPV based scc has a better prognosis. But is it "medically" necessary to determine whether or not HPV is involved?

Thanks,

Oscar

Stage IVa SCCA, rt tonsil, (1) level II node (3.2 cm). No ECS. Neck dissection, 30 IMRT. Spared chemo because no ECS.

You have had all the proper treatments following that absolutely proper diagnosis methodology. At this stage of things it makes no difference to you. While there is a small survival advantage, please remember to get your follow ups without fail. That survival advantage so far has only been looked at short term, and we have no idea what it might be at 10 years, or longer. Eternal vigilance... or eternal rest.

Oscar,

I pushed and pushed to get my cells tested for HPV so that I may have peace of mind just knowing what caused my cancer and that was 2 years ago so you know how I will advise you.

Re the medically necessary reference...IMO your mental well being is medically necessary so if finding out if you test positive or negative might help your mental outlook then do it.

Does having HPV+ SCC improve your survival chances? Some say yes and some say no so I choose to listen to the experts that say yes and hope their correct. I sleep better at night that way.

David and I do this on regular intervals. He had to know. It makes him feel better. For others, it makes no difference... especially after the fact.

You were having a great day. You stepped off the curb and a truck hit you. You were taken to the hospital, evaluated well by the doctors, and treated appropriately given that (for your bruises and broken leg) they did what every hospital in the US that was a quality hospital would have done. There were NO other treatment options available to them. You have been discharged from the hospital in good condition, a little worse for wear, but your life is going forward. Your doctors have told you to come back regularly so they can check that you are healing well, and that any potential for new problems related to your situation are caught early.

Now. Does it matter to you if it was Ford or a Chevy truck that hit you? Are you going to be doing anything different if you knew? No. You are going to be looking for ALL trucks, and probably for cars as well... and me, I'm so gun shy, I'm looking for bicycles too. But the knowledge of the type of truck still makes no difference to me. Perhaps there are some very speculative reasons for knowing. It may be that all Ford trucks have a blind spot, and they do this more often. Am I going to really just look for Ford trucks? No. (I'm a puss and I'm even looking for bicycles etc.) The other brands are still a danger even if those Fords might be a bit worse or harder to see coming.

It may be that Chevy trucks have a softer bumper, and people that get hit by them seem to get hurt less and live longer. Am I only going to be looking for Chevy trucks hopeing that if another one hits me it is a Chevy? Of course not, I'm looking for everything. If some safety expert down he road publishes a paper that says Fords driven by white people, especially in the dark, that are painted blue hit more people than others, will I find it interesting? If I was hit by one just like that, sure, but can I do any thing with that information? No. I am a science nerd, so I am reading about truck accidents all the time, and because I have a national platform to talk about trucks hitting people, I stay boned up on what's going on in this whole thing. But do you need to? Probably not. But if you are the kind of person that has to have an answer for everything that happens in your life, you could chase this forever and a day. You may one day find an interesting factoid or something that may influence your behavior, you may become an advocate like David, asking people to be for looking out for Trucks, Fords in particular, but for the bulk of people right now... I think it is just an exercise to know what kind hit you.

Consider yourself lucky that the truck didn't kill you. Live each day fully. Look both ways before you step off the curb. Have your doctors check you for any recurrence of issues related to your accident.... which you of course had no way to predict, prevent. All that is left for you, is the future.

Just to follow thru Brian's creative analogy....If I spent my entire adult life avoiding Fords because I was told they could kill me and I was told a Ford hit me but I knew that was improbable then I would want to try and find out what really hit me. So I hired a detective who did a test and I'm convinced I was hit by a Chevy and while I was still hit at least I'm satisfied that I avoided the Ford.

Okay, you guys are crackin me up...very nice analogies...

Ah, David -- but you paid your wife $2 million to find out it was a Chevy! ;-)

It helped both my husband and me to know that his cancer was caused by HPV. Plus, he was treated at Hopkins where much of the research on the role of HPV is being studied and we liked feeling that we were contributing to a greater understanding of oral cancer (something positive out of a bad situation). But, I think it's a very individual decision as knowing his was HPV+ has made us wonder how that could be given our very long-term, monogamous relationship (e.g., how long does this virus stay in the body or are there other means of transmission?), what about risks to me?, has the virus really gone away?, etc. So, you answer one question but are left with others.

I guess in the end, the story is that you can do everything right in life and still get blind sided by something that will take your life. I became acutely aware of this in Vietnam, where wearing your flack jacket and helmet, staying close to the ground when the shit hit the fan, and other obvious precautions still did not prevent people who did it all right, from getting shot or killed by some random piece of shrapnel flying through the air. Right next to you. It could have so easily been you instead. You can't predict or avoid everything, and once the die is cast, it is what it is. Even understanding what hurt you does not change much for me. For David it does. People are different.

The moral of the story is there is no way to protect yourself from HPV16. If it enters your life, and your immune system is not prepared (genetically) to deal with it, you have a problem that you won't foresee, can't prevent, and will have to deal with whether you want to or not -but if you spend too much energy and time thinking about it, it takes time that you could be spending thinking about something positive in your life instead. I respect David's desire to know. I am glad he finds some satisfaction in that knowledge. If there were something that you could do with that knowledge (after a cancer diagnosis) I would definitely be on his side of this perspective. The one positive I see in David's interest, is that he has been able to take that knowledge public to educate others. Right now that education is important because people who think they are safe by not smoking, need to know that they cannot skip oral cancer screenings as a mandatory annual event.

Sophie - You are absolutely right. Because you were at an institution that had a researcher that was really looking at this, you have knowledge about your disease that others might not have. You still had to go through the same treatments, but you realize that in the end, even knowing what you do, you are still left with more questions than answers.

Let me help with a few observations. It is now believed that there are non sexual means to transfer this virus. Given how easily other forms of HPV transfer, 16 is likely no different. There is no answer to the dormancy issue related to the virus at this time. Other viruses are in you forever - bouncing through periods of activity and dormancy. Herpes Simplex 1 and 2 are an example of this. So it is also possible for some versions of HPV, but not proven at this time. Because it is such a common virus, it could be that your immune system deals with it, but you jut get re-infected over and over again during your lifetime. Lastly, it appears in preliminary studies that those people that are HPV positive before treatment, still are afterwards. This data is somewhat confusing. Because the studies are preliminary, we don't know if the people after treatment got re-infected or it persisted through treatment. If it persisted, that is a good indication that it may go dormant somewhere remote in the body from the area of the disease site. (Herpes Simplex lives on the ganglion of your nerves when dormant, far away from the oral or genital environments where it produces lesions when active.)

Hi,

Thanks for the frank responses.

I tend to agree with the getting hit by a chevy analogy. From my wife's PAP tests, I know she has been exposed to HPV. I can make the assumption I have been exposed/"infected" also. If I want to feel a little better about my condition, I can tell myself that HPV is the culprit (seed), and a compromised immune system brought on by a very very very high stress personal situation functioned as the soil, water, and fertilizer, and two years later...blammo...scca sprouts in my tonsil, striking like a thief in the night, out of nowhere. A very simple cause and effect--skip all of the other extraneous details, because the end result will not alter where I stand today.

Having said all of that, however, it still would be nice to know. I'll bring this up during my next visit in November.

I have absolutely no room to feel bad for myself. I heard news today the an ex-coworker of mine has ALS...he is a husband and father. We all need to be very thankful that we are able to function enough to type on this board and receive treatment for oral cancer--many others are much less fortunate.

Regards,

Oscar


Stage IVa SCCA, rt tonsil, (1) level II node (3.2 cm). No ECS. Neck dissection, 30 IMRT. Spared chemo because no ECS.

If anyone wants to put their troubles in perspective just visit the children's cancer ward. I did 2 years ago and I still have images and thoughts that haunt me.

Oscar,

Don't beat yourself up over HOW or especially WHY you got OC. Do get tested and if HPV is present don't think you had something to do with it because continuing research is showing that HPV may be just as easy to come in contact with as a common cold. Well maybe not that easy but certainly a lot easier than first thought. They are finding many many different ways one can be "infected" and they still believe that it can lay dormant for decades before acting up and they have yet to find out how it goes of stays dormant; what triggers it's period of activity and especially why or when that period of activity may lead to cancer.

Brian,

You and I have talked many times about HPV but I forgot if you told me or if I even asked but how do/did they test for the post Tx presence of HPV orally?

There is no oral test for HPV. The company that has the only FDA approved test for cervical is considering the options to make an oral assay system. The essential problem is the cervix is tiny and easy to sample, the oral cavity is a huge place to sample from.

Removed cells can be examined in a couple of ways the most common is PCR testing which is expensive and manually done. Not practical as a general screening technique.

Then how did their tests conclude that there was a presence of HPV post Tx orally or did I misunderstand what you said?

Cells are collected from specific sites in OC patients. (This is not a screening like you would do for the general public.) In these patients, the cells were collected by biopsy, manually PCR tested in clinical trial situations. There is no HPV screening test for the general public.

Brian,

Forgive my ignorance... what does PRC tested mean?

Thanks!

Margaret,
This probably should be PCR which stands for Polymerase Chain Reaction...

It basically means they will test if a certain DNA sequence (ie HPV 16 etc) is present.
It is amazingly sensitive.
So the idea is they test the DNA of the cells and see if the sequence of the virus are there as well. It is a needle in the haystack thing.
This also points to the achilles heel of this test. You can test all you want and the result is negative unless you sample these cells that are infected by the virus. .... if you see your cancer then it is easy to know WHAT to test. Otherwise the question is which cells are your testing... anterior tongue, BOT, floor of mouth, cheek etc.


M

Polymerase Chain Reaction. It is essentially a DNA test that can be used for lots of things. Not cheap or fast. http://www.accessexcellence.org/RC/CT/polymerase_chain_reaction.php

Another test that works for this is an in situ hybridization test. http://www.answers.com/topic/in-situ-hybridization

This is really beyond what any cancer patient needs to know about right now.

Thank you both! Yes, its probably more than I need to know, but its kinda cool to know it.

I was never told I had HPV from any test but was told that I have a very unique form of oral cancer. Whatever that means. It's like the 16 days or so Ilost from my memory bank,, I was told I am better off not knowing about those days. I quit asking questions about them.