Karen
Thanks for the plain english version. The first post was English but not as plain to understand.

For those who don't appreciate how tough these articles are to get right and how Klo did catch and summarize an important error and bolstered my point about OCF reporting accurately while USA Today did sensationalism, Here are the relevant excerpts of the annual report, It is OP not oral cancer.

On page 15 of the report:
[quote]With respect to HPV-associated cancers, rates increased for cancer of the oropharynx in white men and women, for vulvar cancer in white and black women, and for anal cancer in white and black men and women. Based on data from three SEER registries, the presence of HPV DNA detected in oropharyngeal tumors increased from 16.3% during the period from 1984 to 1989 to 71.7% during the period from 2000 to 2004 69. The increasing trend for HPV-associated oropharyngeal cancer rates is in stark contrast with the overall decreasing trend for tobacco-related oropharyngeal cancers, largely because of declines in cigarette smoking 70. Increases in rates of HPV-associated oropharyngeal cancers have also been reported in Canada and several European countries, including Denmark and Sweden 71-74. However, it is unclear why increases in HPV-associated oropharyngeal cancers in the United States are confined to white men and women. There are no data on the natural history of oral HPV infection or on changes in the prevalence of infection over time among the general population or among oropharyngeal cancer patients by race and ethnicity.[/quote]

Footnote 69.Chaturvedi AK, Engels EA, Pfeiffer RM, et al. Human papillomavirus and rising oropharyngeal cancer incidence in the United States. J Clin Oncol. 2011; 2932:4294-4301.

As I prefaced my USA quote: if you don't go the actual study, you will get burned by relying upon newspaper reports.

Caco

Thanks for that link. Two very interesting things about that CR article. First, it makes the same mistake that Klo lambasted the USA today reporter for in conflating orophyrangeal tumors with all oral cancer tumors
[quote]The presence of HPV in mouth and throat tumors was around 16 percent in the 1980s, then it mushroomed to roughly 73 percent in the 2000s, according to an extensive review of data from three cancer registries in the Nov. 10, 2011, issue of the Journal of Clinical Oncology. [/quote]
Second, the Consumer Reports Medical Advisor, Dr. Orly Avitzur recommended [quote]
Be sure that your regular dental visit includes an oral soft-tissue exam. Because the base of the tongue lacks pain fibers, tumors in this area often cause no symptoms until they've grown significantly.[/quote]�
What could have changed in one year?

Thanks for flagging that article
Charm

I'm not big on collective opinions. That is why I just emailed you a draft of a letter to send to Consumer Reports.

But if everbody chimed in that they like it, I would not object

I've copied it below in case some OCF members want to use portions of it in their letters to newspapers or TV. Folks, remember, Brian may not use any of it or take a different tack so this is not an official OCF position. But if each of us just did an short on line comment to our newspapers when they report it saying that the CR article conflicts with the official position of USPSTF despite implying it does not and is a flip flop from prior good advice to get oral screening from CR's own medical advisor, then the word may get out. Focus on "misleading" and "flip flop" without getting overwrought.

[quote]James A Guest
President & CEO
Consumer Reports

Dear Mr. Guest

It was deeply disappointing to read the March 2013 cover story of Consumer Reports (CR) which recommended avoiding a test for early detection of oral cancer. The full article is misleading in its implication that CR ratings were consistent with those of the U.S. Preventive Services Task Force (USPSTF). Specifically, the U.S. Preventive Services Task Force (USPSTF) concluded that the evidence is insufficient to recommend for or against routinely screening adults for oral cancer�(emphasis added). This is the equivalent of the white button (neither likely nor unlikely) instead of the lower half black button (unlikely) of CR.
http://www.uspreventiveservicestaskforce.org/uspstf/uspsoral.htm#related
Consumer Reports decision to downgrade the USPSTF rating is especially puzzling since it flip flops CR medical advice , in your February 2012 issue. In her report on HPV, CR Medical Advisor, Dr. Orly Avitzur recommended Be sure that your regular dental visit includes an oral soft-tissue exam. Because the base of the tongue lacks pain fibers, tumors in this area often cause no symptoms until they've grown significantly.In effect giving oral screenings a positive rating of likely or very likely. http://www.consumerreports.org/cro/magazine/2012/02/how-can-you-get-HPV/index.htm
What has changed in one year that would cause Consumer Reports to reverse a well founded recommendation ? The article gives no inkling of any valid reason. Unlike some cancers, oral cancer is fatal if not treated. The only rationale given by CR is that the cancer is relatively uncommon.
The March article ignores the concerns of the special section on the trends of Human Papilloma Virus (HPV) in the Annual Report to the Nation on the Status of Cancer: 1975-2009 done by the American Cancer Society, the National Cancer Institute, the Centers for Disease Control and Prevention, the North American Association of Central Cancer Registries, and published in the Journal of the National Cancer Institute http://jnci.oxfordjournals.org/content/early/2013/01/03/jnci.djs491.full
The optimal result would be for CR to acknowledge that the prior recommendation in February 2012 remains good advice and retract the misleading March 2013 test avoidance advice. Barring that, the Oral Cancer Foundation would be pleased to work with Consumer Reports to focus on a win win resolution: urging widespread HPV vaccination which if done broadly enough would make the current incorrect recommendation valid in two decades.

Sincerely

cc Paige Amadon,Vice President, Health Programs
Dr. Orly Avitzur. CR Medical Advisor [/quote]

So that's how I spent Saturday
Charm

Great letter Charm!

After reading all the comments to this post and the many that focused on inaccurate and contradictory information between the 2 CR articles and other publications, this really turned into an educational and worthwhile discussion. A special thank you to Charm, Klo/Kathy, and Caco for doing the additional research on this topic!

In Brian�s post, he asked �So what is our collective opinion about what we should do? Mass letter writing, or something more public? Who should we enlist as our strategic partners?�

In my opinion, some of each would be warranted. OCF and its many volunteers have worked so hard to get the word out about oral cancer and the need for early detection via a simple exam at your dentist�s or doctor�s office. And this one article in long established and respected magazine can undo all the good we�ve done and in the process cost someone their life! (Ok, maybe a little dramatic, but unfortunately so true!) One statistic I often quote is that �in the United States, one person dies from oral cancer every hour of every day�. In addition, approximately 42,000 people in the US will be newly diagnosed with oral cancer in 2013. Worldwide the problem is far greater, with new cases annually exceeding 640,000.

I will definitely be sending a letter to the editor at CR and will �borrow� some of Charm�s letter to do so (he is a much better writer than I am!).

I think an �official� response from OCF to CR would be warranted also. A public press release is a great idea and besides discussing the inaccuracies in the CR article can note that �Oral Cancer Awareness Month� is coming up in April. And get those strategic partners in the picture also!

Great detail Charm and all. Net net, the CR OC takeaway = not high risk. That's irresponsible and needs correcting. Write the editor. At the end of the day, HPV makes little sense to the general population exposed to it, until it does.

Thank you, Charm, for posting the draft of your letter to Consumer Reports.

Brian Hill, I am hoping to see a formal response from OCF. CR's opinion carries a lot of weight, and I hate to see it go unchallenged. CR should be publicly called upon to support its recommendation and to clarify its "flip-flop," as Charm refers to it.

I was shocked and disappointed in the magazine's recommendation. There is no harm in having a visual exam. Without a dentist's exam, I would be dead now from tongue cancer, even though I am in the low-risk group (never-smoker, never-chewer, light drinker, HPV negative, otherwise healthy).

Last week, I posted on CR's Facebook page and wrote an email to CR asking one question: What risks and benefits were considered in the analysis?

I have not yet received a response. I plan to write to the editor, too.

I am glad to see that others are seeking answers, too.

Thank you!

Okay. I just got a blow off notice from Consumer Reports thanking me for my comment from a customer service representative and of course the email was : [email protected] In other words, drop dead, we don't want to hear about it. That's because I used their comments and addresses as I could not find one for the president. But the cavalier dismissal email got me looking again and I found it. I just sent off via email, the draft I posted here. except of course it did not mention OCF , just a cc showing to Brian. so it anybody else wants to email the head of Consumer reports about this travesty of consumer information and ask the same questions,. here is the President of Consumer Reports, James A Guest's email address
[email protected].

If you think he owes us an explanation, please email him. Feel free to use any of my draft but remember these are our opinions, and not OCF's position. the message is simple enough: Last year CR told us to get an oral exam because of HPV, this year, CR says don't bother and give it a lower circle rating than the federal government task force it keeps citing.
Maybe if he gets enough , we can get a response.
Charm

Just sent my email. Thanks for drafting the letter. You saved me a lot of time as writing does not come easy for me.

Hi. I am a 74 year old retired professor living with my wife in Colorado. I'm new to the forum. About 3 years ago, my dentist found a small growth on my tongue, which was evaluated and removed at CU Medical Center in Denver. Two years later I had some pain in my tongue and went back for another checkup. The biopsy was negative. Another biopsy 4 months later also was negative. A third biopsy a month ago came out positive, and I had it and some lymph glands removed on April 10. That was a miserable experience.

Sometime before the surgery I saw the Consumer Reports (CR) article, "Save your Life." I sent the following letter to the editor:

"Concerning your report, "Save Your Life" (March 2013), why do you recommend that I "avoid" oral cancer screenings? Dentists and dental hygienists are trained to screen for oral cancer whenever you go in for a routine dental exam or have your teeth cleaned. They visually inspect your mouth and it takes maybe 2 minutes. There is no extra charge. As long as you are at the dentist�s office and you already have your mouth open, why not have them take a look?
Incidentally, about three years ago my dental hygienist found a suspicious small white growth on my tongue. It was diagnosed as a squamous cell carcinoma and removed surgically at CU Medical Center in Denver. I�ve had no problems with it since. I�m glad I didn�t "avoid" that oral cancer screening, per your recommendation."

I received a form letter response from CR saying they take all letters seriously, but receive thousands of letters and can't print them all. Blah, Blah! There was no way for me to respond to their form letter.

I sometimes have a hard time letting go of things, so I sent the following note to the CR "mistakes" customer service person. I don't expect a reply.

"In its March, 2013 issue, CR recommends that we readers avoid oral cancer screenings, and that to have such screenings can pose a variety of problems for us. I think that all dental schools now teach their students to screen for oral cancers during routine dental exams. If screenings pose a serious risk to patients, should dental schools immediately eliminate such training for their students? Do you think that dental schools are being irresponsible by offering such training to their students? Instead of teaching students to perform exams, should they instead be advising their students to not examine their patients for oral cancer? Should I refuse to let my dentist look in my mouth for oral cancers? If my dentist should not be permitted to look for oral cancers, should I not look myself? If I inadvertently see something in my mouth that looks odd or suspicious, should I just put it out of my mind and assume that it is not an oral cancer and all will be OK?"

I also forwarded my CR letter to the American Dental Association (ADA). Here's the response from the ADA:

"Hi Dr. Smith,
It�s nice to hear from you. Thanks so much for sharing your follow up with Consumer Reports with me. I found out that CR is scheduled to publish the ADA�s letter to the editor in its June issue. The ADA News wrote a story about our letter: http://www.ada.org/news/8395.aspx
In addition, the ADA joined with other oral health organizations in drafting a joint press release to media about the value of oral cancer screenings. Check it out here: http://www.ada.org/8514.aspx
I�m so sorry to hear about your recent surgery. Here�s to wishing you a speedy recovery.
Best,
Lydia

So, the ADA is right on top of things, and they were nice enough to respond to my letter. CR apparently just sends off form letters, and that's it. Too busy or whatever! One of the disturbing things about this is that when organizations like CR get really large, they becomes inaccessible. I remember when a person could write the president of a large company and have a good chance of getting a reply. Letters now go right to the customer service department, and that's it. There are a few great companies like REI or Patagonia that are exceptions.

Hope this is not too wordy for a first time poster to the forum. I don't know any of you, but wish you all good health and peace of mind.

Nice job of playing the oral cancer advocates we can never have enough of them around.

It's a little funny about the ADA. 13 years ago they were complete disassociated from the whole oral cancer thing, let alone screenings. I fought with them for years, and they too still have an evidence based component, that has a schizophrenic position that does not recommend OC screening right inside of the ADA organization today. Crazy. But in the last 2 years the ADA has come under new leadership (thank God) and the current director comes out of a public health background. I can't tell you what a breath of fresh air she is to work with. This year the ADA was one of our professional partners in Oral Cancer Awareness Month, something that just 5 years ago would have never been possible. The world changes slowly, but if you keep banging on their door change does occur. OCF has for a long time been viewed by them as a torn, but the lights are finally on at the ADA, now one of our strategic partners every April.

By the by, all these things that are in play right now about the value of screening, are based on the fact that there is no peer reviewed published paper that shows that oral cancer screenings have any value - including reducing treatment related morbidity. (This isn't complete true, there is a great Lancet article but people don't wish to talk about that huge success story.) Of course all of us here know far too well that are very early stage one find compared to a stage four find, is a huge difference in treatments received, and long term quality of life issues afterwards. Because of this issue at CR and another public health report about to come our of comment period and find something very similar, I (OCF) have been doing a lot of interviews related to all this in the media. I have made a point of telling journalists and others a very simple thing.

We do not see peer reviewed published papers on things which are self-evident, which any head and neck surgeon can tell you - that stage one patients live longer and stage four patients less so (SEER database info). That stage one patients retain their ability to eat and speak normally and stage four patients less so. Then I ask them to show me the published study that proves that parachutes work and are beneficial. Of course there is none, because the issue is self evident. The government (FAA) requires me to wear one when I engage in aerobatics for practice or competition, and every military pilot wears one on every mission. We don't need no stinkin' report to prove to us that they work...