I'm sure this will get picked up by the OCF RSS news feed -- but for those who don't subscribe to that feed, the Chicago Tribune has an
article today (Sun. June 8) about the HPV connection to oral cancer, along with a
short sidebar on screening.
-- Leslie
Its great that papers with a large readership are publishing stories on that.
THROAT CANCER!!!! What the frack is up with that? This is oral cancer, ORAL Squamous Cell Carcinoma!!! No wonder people don't hear of oral cancer.... the media after researching an article can't even get it right. And have you read the LAME comments about the story that follow it? So far 36.... read the comments from these rocket scientists, and be proud that we are such a tolerant and intelligent population of people.
Brian,
Apparently the throat is now a separate entity from the oropharynx as declared by the journalist who wrote the article. I feel that your vent was a little lax in that area and could have had a little more Ummph or 4 letter words like, $#@%, ####, and $#@%! Cause, after I read the article and your post I used those words.
When are the mass media gonna get the story straight?
I share your pain Brian.
Kindest Regards,
Mike
To be fair, the May 2007 news release from Johns Hopkins about this research
was titled "HPV Infection Linked to Throat Cancers" -- so the Tribune reporter should not be the sole target of any venting.
You could always send a letter to the editor (online submission form
here) or write to the public editor (ombudsman),
Timothy McNulty, urging a clarification.
-- Leslie
Leslie B,
You are correct in the "Fair" part and I respect your due diligence in this. Now I'm gonna vent a little. All to often I have seen articles in journals and the media pulling the heart strings of the masses and see the obvious disconnection of the oral cavity (mouth) from the rest of the body. You and I and almost everybody on this site knows the difference. We are few and the media in their minor misinformation are not helping the masses. We have all heard the joke, "What do you call a Dentist who comes last in his class?"....Dentist. FYI Dentistry used to be a specialty after medical school. Well if this minor little media reporter could delve a little deeper into the realms of oral cancer he may have been able to help the whole situation.
I am not trying to demean the releveance or the message or promote my profession but put forth the importance of getting the facts straight; attention to the tiny (not so tiny as I see It) details, some attention to oral cancer may have been gained as Brian has eluded to.
Cheers,
Mike
I have talked many times to Gillison about this. She agrees that the tonsils are not part of the throat nor is the base of the tongue. For that matter the oropharynx is the very back of the mouth, with the nasopharynx above it, and the pharynx below it (that one in the throat). Truth of the matter, it would have been nice had the writer actually talked to anyone in the know including Gillison who would have said this to them. They would have also gotten this from the articles which clearly state OSCC. Perhaps someone else could just send them a note... Dr. Mike perhaps, or you, on behalf of the OCF. I am leaving at 5 AM for another lecture engagement and by then this will be old news.
On another note can you believe the postings in relationship to this article? I have lost all faith in the intelligence of the American public.
Brian,
Forgiveness is easier than permission. I have already sent an e-mail to the author and publisher with anatomical descriptions from medline and detailed anatomical illustrations from Netter. I hope they recieve it.
I also hope you approve.
Respectfully,
Mike
Well I actually find the comments BETTER than what I encountered when the article was written about my cancer and the HPV connection a little over a year ago. Appx 1/3rd of the responders in effect said...I deserved my cancer !! Then when I testified before the Florida House on the Gardasil Vaccination Bill the comments coming from the Republicans were absurd even calling for total abstinence. I guess they hadn't thought that one through enough. What we need to is much more education about HPV and that's what I have been trying to do ever since I found out it tried to kill me.
Sorry that I was late to this story. I just read the article and reader comments and I am speechless, something that is a rarity for me.
I will refrain from contacting the paper and the writer as I see that everything is well taken care of by my colleague, Dr. Mike.
Thanks Mike.
Jerry
I wrote a long reply after Dr. Mike, but in checking the postings today (24 hours later) they did not post it. I guess facts and science have no place in a thread of inane comments.
Brian,
Who is Steve? I'm sure you must know.
Jerry
I don't know who Steve is...but he's a mighty articulate, well-informed individual. What a fabulous job he did in his explanations.
Thanks Brian,
I know that you have given me this link before. This time I signed up for their RSS feed and joined the site.
Jerry
That headline, beside its titillating nature, is not helping.
And neither are these reductionists approaches.
There are a fair number of people who had none of the risk factors/behavior and still ended up with oral cancer.
M
Now that the HPV connection is concrete, I believe (from what most of the lecturers I have been touring with state) is that it is still about 5 % that we have no clue why they come to this disease. Gene's and other unkowns at this time will likely always keep that number there. It will never come down to we know in everyone how they came to it. As a side note I sent an email to Gillison et.al. about the use of the name throat cancer for OSCC when talking to lay people, and in naming their articles, and what harm I think this is doing is keeping OC in the dark recesses of people's awareness.
Only 5% unknown. That's interesting because I've never read anything that broke the causes down but it also surprises me due to the number that seem to post on this site who aren't/weren't tobacco users and say they tested negative for HPV.
okay they removed most of my cervix back 9 years ago because it had hpv on it how do you get your throat tested for the virus
They (Johns Hopkins and probably a few other CCC's by now) can test the slides confirming your cancer. My CCC, Moffitt, sent my slides off to JH and the results were back within 2 weeks.
My oncologist explained me that only the biopsy can be tested for HPV. My biopsy was not tested at the time, so no test can be done now to determine an HPV connection.
He did mention that as more is learned about HPV and oral cancer, that it may lead to more customized treatment for those cases.
oh so there is no test to see if the virus is in your throat before you develope cancer
Kim,
Not to my knowledge at the present time. They must preform the test for HPV from the slides that confirmed the presence of SCC.
Ron,
While what you said about the testing of the biopsy slides is correct, what your doctor lead you to believe is not. Most, probably all, "keepers of your biopsy slides" keep them for years. Moffitt told me they keep the slides for 7 years so there may be some law in effect. Anyway, I'm sure your slides are still available for testing if you want.
David,
That's interesting. It was my medical oncologist I spoke to. Maybe the ent surgeon who did the biopsy would provide a test option.
I do have mixed feelings about knowing at this point. On one hand, I'm curious. On the other, I don't want my mind to get into a "what if" kind of mode, or at least any more then it has.
My medical oncologist said that while they are a CCC, they are not set up for HPV testing of the biopsy. He looked into getting it done elsewhere but at least in the DC area, Blue Cross Blue Shield doesn't pay for such testing post biopsy. I had asked to get it done after reading the info here. Sort of moot at this point, since I had maximum treatment anyway although it would be reassuring in light of indications that HPV base of tongue cancer is more amenable to having a CPR (complete pathological response) go with the CCR (complete clinical response) that I got so far.
Moffitt at first resisted saying things to me like "what difference does it make (meaning I was a non smoker and casual drinker) you have the cancer." Well it did make a difference to me finding out what and why I was being attacked. Back then HPV was as hard to find as a 3 legged snake. It was not even mentioned by my Moffitt team as a possible cause so I went thru the entire Tx wondering why I had a cancer caused by heavy tobacco use combined with heavy drinking. They even referred to my cancer as the "Old Foggies Cancer" describing it as attacking someone in their 70's who sat in bars all their life drinking and smoking. Their description, not mine.
So after I started to walk out of my Tx tunnel I for the first time went to the web and found another OC website and started asking questions. This site would take DAYS to get a response posted. UGH Then one day Brian e mailed me and said "Come to my site, it's better." I did and even though I was appx 3 weeks post Tx, found this site to be wonderful. It was also here that I was told of a poster's husband who was similar to me and tested positive for HPV. I was like...What is HPV and what does it have to do with his cancer. He was being Tx at Johns Hopkins and we traded e mails and the rest is history. Even before a recent study concluded that there may be advantages (stupid word here) of HPV+ vs HPV- SCC I felt relieved to know that my decision to quit smoking 40 years ago was not wasted. After discovering the facts about HPV I wanted to get on my soapbox and tell as many people as I could so that they would not have to go thru what I did to find out what was trying to kill them.
Well all I can say is that the Tribune article made me feel like a slut... Given the prevalence of HPV in the general populace it is horible that the media has to focus on the "oral sex" aspects of transmission. It might sell more papers, but it really puts a stigma on those effected...like we deserve it for being so promiscious. Our disease has nothing to do with our virtue, of that I am certain.
Oh and just to clarify some of the above posts. HPV does not live on your cirvix or oral cavity exclusivly. It is a virus that pervades your whole body. It just seems to only show simptoms on these areas (as far as we know) and on skin.
I went to a medical oncologist at a small hospital. She said she'd bet that I was HPV positive. At the time, I didn't care because I felt it wouldn't alter my treatment, but agreed to have my existing slides tested. I'm not sure where she sent them, but it was not big deal (e.g., she didn't say she was sending them some place special). I'm guessing she decided not to do chemo based in part on the postive HPV results, age, and my overall good health.
There is not TODAY a good mechanism other than biopsy and then PCR testing to check for HPV to be 100 percent certain. There is likely to be a mouth swab or swish test in the next 36 months based on the Digene brush cytology test that is FDA approved for testing for HPV on the cervix. Problem with mouth testing is that is a big area and while we know the areas it likes to go to (tonsil, tonillar crypt, tonsillar pillar, base of tongue and oropharynx) that is still a lot of geography. The general opinion for now is that HPV likes to go to the sqamous cells of your body, which line every opening to your body and the cavities associated with them, which also have moist squamous cells on them. This is the mouth, the vaginal area and cervix, the anus and the penis for now. New data is coming out weekly. The HPV page of the OCF web site is constantly being updated with the latest articles in their full PDF format for those that wish to get the most current information. Small studies that have not been replicated are not there at this time, we only post articles that we are 100% sure of the data they contain.