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.