I completed radiation therapy in April 2006. The radiation field included my lower jaw (front teeth and right side). I had a lot of problems after treatment including a very slow healing process, and frequent mouth ulcers. Earlier this year I noticed my lower front teeth had shifted. I had x-rays taken and determined that I have osteoradionecrosis (ORN). Also found out this year that I have osteopenia and I'm taking calcium supplements daily.
My front teeth are a little loose (my dentist called them "mobile") and he said there is a good chance I would loose them at some point. My dentist and oral surgeon recommended I undergo HBO therapy and I recently completed 45 treatments. They also recommended I visit my dentist every 2-3 months for an exam and cleaning, take antibiotics before each dental cleaning, continue using the fluoride trays daily, and wear my lower tray nightly to help keep my teeth in position.
My teeth were in good shape before radiation, but they recommended I have my wisdom teeth removed before I start RT (which I did) to avoid potential problems with them in the future. I am now able to eat most foods, but avoid biting into anything with my front teeth.
I'm hoping to keep my front teeth, and was wondering if anyone has any other suggestions?
Thanks!
Sounds like Consumer Reports needs a little updating and could use some OCF information. Susan - if you do cancel your subscription, be sure and tell them why!
Appalling isn't it? The month before one of their contributing MD's wrote an article re OC/epidemic proportions. I messaged Jamie at OCF as this is a great oppty for response.
BULLL POOOOP!I would write them and give them an earful! Go for it or tell me who to contact and I will!
Not that I'm against it, but maybe other considerations are included like the problem with just a visual oral screening in that the oropharynx is not totally visible, accessible, and BOT cancer can be deeper in the structure, and have no visible cancer signs on the surface. HPV almost always involves the oropharynx, which is on the rise, and usually doesn't present with any leukoplakia or eruthroplakia either, so a clear oral exam may mis oropharynx cancer. Most oropharynx cancers are usually found in advanced stages, usually from an enlarged lymph node, as in my case, and two ENT's could not find any cancer by a visual, palpable and flex scope exam, but sent me for further testing. Other countries have mandatory oral cancer screenings like India, Cuba, I believe, which did not lower the cancer rates due to follow up, and other reasons. I guess better screening, new testing, follow-uo, vaccination, and education may help too.
What's misleading in the article is that OC screening is *not* a test, it's a visual exam that dentists should provide at cleaning time. The article lists Oral Cancer under the bold banner "Avoid these screenings" and the cover page "gotcha" reads "3 Cancer Tests You Need Plus 8 You Don't."
Dr. John Santa from Consumer Reports was on the CBS Morning Show today talking up this article. Incidentally, in Feb '12 CR ran an article regarding the "Ballooning Risk" of HPV/Cancer
http://www.consumerreports.org/cro/consumer-reports-magazine-february-2012/hpv/index.htm ...as the doctor who wrote it works with Santa, it mystifies me as to why a simple screening for OC made their list.
I'll work on a response as I'm with Jamie at the Yankee Dental Congress in Boston, where I'll be teaching our dental professionals how to do a "proper" OC screening (which isn't just visual btw) and why it benefits their practice to do so.
Thanks Eric! I was hoping we could send them an OCF response. I may still send one of my own. Enjoy your time in Boston. I'm sure you and Jamie will make an impact on the dentists in the Boston area.
Batman to the rescue...:) I am so grateful for all of the active members of this board who are out there advocating for our cause.
I'll tell you the other thing that makes me nuts, if you do see an article on HPV and cancer, all they talk about is girls/cervical. Wake up and smell the java!
What is really frustrating about the Consumer Reports recommendation to skip oral cancer screening tests is it's stated basis; [quote]Who needs it: Most people don't need the test unless they are at high risk, because the cancer is relatively uncommon.[/quote] Why would they say that Oral cancer is just not common enough to worry about.? Because when 99% of cancer deaths are not oral cancer related and 97% of new cancers are not oral cancer, we remain a forgotten minority. The ACS 2013 cancer figure projections are 41,380 cases of oral cancer out of 1,660,290 cancer cases or less than 3%. Yet they recommend oral screening in their 2013 facts and figures
For deaths in 2013, 7,890 out of 580,350 or a little more than 1%.
ACS- 2013 Cancer facts and figures worse, all the news reports and interviews published with the doctors responsible for this bad advice all stress that Consumer Reports relied primarily upon the USPSTF reports. Yet the actual report on oral cancer screening was: T[quote]he U.S. Preventive Services Task Force (USPSTF) concludes that
the evidence is insufficient to recommend for or against routinely screening adults for oral cancer.[/quote] Plus the USPSTF report is now over nine years old, released in February 2004. This fact is hidden by simply repeating the old 2004 analysis in the "new" 2012 guide. True if you read closely you can see [quote]The 2012 guide covers USPSTF recommendations from 2004 through March 2012, [/quote] It's misleading to say these are 2012 USPSTF recommendations. Worse, when you go to the USPSTF web site to read the report, you see that there is an "update" file on "evidence". Turns out that this update is even older and is based entirely on The search strategy for this brief update included
[quote]a MEDLINE review for English-language articles
published between 1994 and 2001 on new direct
evidence on the benefits and harms of screening and
treatment for oral cancer[/quote]
USPSTF oral cancer And it gets worse: the "rationale" for the USPSTF sitting on the fence is
Rationale: [quote]The USPSTF found no new good-quality evidence that screening for oral cancer leads to improved health outcomes for either high-risk adults (i.e., those over the age of 50 who use tobacco) or for average-risk adults in the general population. It is unlikely that controlled trials of screening for oral cancer will ever be conducted in the general population because of the very low incidence of oral cancer in the United States. There is also no new evidence for the harms of screening. As a result, the USPSTF could not determine the balance between benefits and harms of screening for oral cancer.[/quote]
so it's a Catch 22:
So it turns out that Consumer Reports is just as unreliable as Dr. Google on oral cancer.
But then we long time subscribers have watch Consumer Reports degenerate into a primarily car buying and car review operation with outdated reviews and model listings not sold in a year for all other areas..so now they deceive by omission by falsely implying that the USPSTF supports their analysis when it fact it does not.
Charm
As Charm mentioned, it probably does have more to do with the numbers than anythng else. I don't subscribe to CR anymore either. Did so on-line for Medicare plans search, and didn't find it too helpful.
Charm...as always my friend, You Da Man Yo!!
Okay, now that I've calmed down, what is the takeaway from this CR article? It ignores all the facts about HPV and oral cancer in the newest Annual Report to the Nation on the status of Cancer & HPV co sponsored by,ACS, CDC, NCI, & NAA CCR.
Annual Report on Cancer But I am willing to bet most reporters will just read the USA today summary and comments; since it is far more sensational than OCF's news coverage:
ocf news annual report USA today annual report I'm equally guilty and these quotes are from the USA today.
the last paragraph is my reading of the full report. You can never trust anyone else's summary of these reports or you will get burned.
[quote]A new report documents a disturbing rise in the number of cases of cancer related to HPV, a family of sexually transmitted viruses linked to tumors of the cervix, head and neck, and several organs.
The spike in HPV-related cancers defies the generally positive trends in cancer, whose incidence and mortality rates continue to fall slightly each year,
[/quote]
[quote]The proportion of HPV-related oral tumors has increased, however, growing from 16% of all oral cancers in 1984 to 1989, to 72% of these tumors from 2000 to 2004, the report says.
[/quote]
What I am surprised at is Consumer Report's focusing on how relatively rare oral cancer is, considering that USA article states that [quote]about 12,200 women a year are diagnosed with cervical cancer, while 7,100 people develop HPV-related oral cancers, according to the Centers for Disease Control and Prevention, another sponsor of the report. If trends continue, oral cancers will overtake cervical cancers as the leading cause of HPV-related tumors by 2020.[/quote]
The Annual report focuses on having the HPV vaccine given to all girls and boys to create a "herd immunity" as the only practical deterrent and primary preventive tool. Makes early detection moot.
So Consumer Reports could still save face and issue a "clarification" that among the reasons listed, a major factor was that if every parent had their boys and girls vaccinated against HPV, then this cancer would fade away and even smaller numbers would need any detection test. wishful thinking on my part
Charm
Charm� the master of deductive reasoning. It very much a shame that the world is an unreasonable environment. Your solution is too elegant to actually work. Our circling sphere is filled with flawed beings who are entrenched in their own ideas, and should they make a miscalculation, their first response is defensive, not corrective.
Human nature it is a complex thing, sometimes beautiful, often disappointing, and sad, even malevolent too often. Getting someone who fancies themselves an expert opinion maker in some area to change their position would be�. like pissing into the wind. Worth a try, but since I do it daily with various entrenched medical organizations and public health opinion leaders, I find my self wet with what blows back�
I still do continue to try. Some think that I must be damaged (I am) to continue in these pursuits.
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?
Without getting too conspiracy theory, I think much of this under the rug stuff is political and connected to vaccine hysteria. Just my .02. Wrote to CBS News and working on a response to CR/John Santa.
Pleased to say that from the beginning of the school year 2013 (which was last week), Australia offers the HPV vaccine for girls AND boys on school immunisation programme. This is a free programme and the first in the world. The argument Charm used was successful in Australia strengthened in no small part by the evidence for penile and anal cancer as well as pointing out the gender bias being exercised by the girls only previous policy. Nothing like a threat to ones manhood to make a male politician take notice
Small note: The US article appears to be wrongly applying stats for oropharyngeal cancer to oral cancer. As HPV occurs almost exclusively in oropharyngeal cancer which only constitutes 20-30% of all oral cancers it is impossible for HPV to be causing 72% of all oral cancers. Unless they are quoting stats for all strains of HPV 99% of which are benign in which case it is extremely shoddy reporting indeed!
Shame shame shame on USA Today!! I just the read the article that Charm quotes and am appalled at their shoddy reporting! The offending quote is below (which Charm has already quoted).
[quote] The proportion of HPV-related oral tumors has increased, however, growing from 16% of all oral cancers in 1984 to 1989, to 72% of these tumors from 2000 to 2004, the report says.[/quote]
The proportion of HPV related oral cancers did indeed constitute 16% of ALL oral cancers between 1984 and 1989 . To then state in the same sentence; "...to 72% of these tumours..." as if this bears any sort relationship to the 16% rate quoted in the same sentence is misleading and wrong. 72% relates to the incidence of HPV caused OROPHARYNGEAL (OP)cancer. 16% relates to ALL ORAL cancers.
The inference that HPV caused oral cancers have risen from 16% to 72% is at best, the result of an ignorant (and unsupervised) journalist, at worst, a ploy to shock and instill fear.
If they want to show how HPV has risen, the measure should be either all oral cancers OR all OP cancers not a mix of the two to tell the best story.
In the interest of those who come after, the numbers are recalculated and corrected (in round numbers only) below.
Just doing quick sums in my head, that 72% figure would be approx 21% of ALL oral cancers. I have rounded the numbers for ease of calculation (not so good at mental arithmetic anymore)and have assumed OP cancer is 30% of all cancers of which 70% are HPV+ve). Alternatively one could calculate the rate of all OP cancers, (again rounded and assumed OP cancer is 30%). This figure would be approx 50% in the 80s NOT 16%.
USA Today can't have it both ways it is either 16% VS 21% of ALL oral cancer or 50% VS 72% of OROPHARYNGEAL cancer. They way USA Today has done it is right up there with suggesting that the apples are the same as oranges because they both come from the same grocer.
HPV is still on the rise and we still need to write our letters, cry discrimination and camp out on our politicians' front lawns, but HPV is a common infection, highly preventable and nowhere near as scary as the numbers quoted in the magazine.
Of course, this level of sensationalism helps our cause to some extent but pity the poor buggers who read it and panic, or worse - the marginalised kid who is beaten up in the park because he is thought to have a life threatening infection and "deserves" a beating. The worst thing to happen for our cause will be the stigmatisation of HPV caused oral cancer.
Karen
You can see the full journal report's take on this at the first link I provided. It's right up your alley with numbers, etc.
Maybe you could even it into plain english. You might even have a little sympathy for the newspaper stringer
I'm more concerned about the Consumer Reports than USA today since IMO, Consumer Reports has significantly more credibility than USA today. Another reason I get my cancer news from the OCF newsfeed.
But I'm guilty of mix and matching here by throwing in the Annual Report which the Consumer Report does not even discuss or consider before consigning us to statistical insignificance.
I should have put that into another thread but I wanted to show how a holistic approach is needed here.
Charm
Charm
Brian
The ideal would be a joint response from the heavy hitters of the Annual Report all pointing out that saying the CR rationale ignores facts on HPV. the logical conclusion from their premises:no testing needed except for HPV "high risk" is that no oral cancer detection tests are needed because HPV is not a big deal for cancer. But too remote to motivate quickly enough
But a well written press release from you, with perhaps a few backup quotes from one of ADA or Oral Hygiene groups expressing low key disappointment that CR did not at least give you the white blank circle that accurately represents the Federal conclusions especially with no reason given and the misleading impression that the feds backed this. Then address their stated reason, we are too small to matter. Raise the real numbers, the trends, and cite Annual Report.
Mention Gillison, OCF's history in HPV, and then suggest that as penance: Consumer Reports advocate the HPV vaccine, for boys and girls, free just like where Karen lives. That with vaccination- again drag in the Annual Report - testing would not be needed. Or that CR does an HPV report in conjunction with OCF.
Tomorrow, I'll send you an email with a rough draft of the above - do with it what you will.
Charm
Oh ... I thought I was putting it into English ...
I will reread the article and try harder to put it into perspective in the next couple of days - right now I have people to see and places to go ...
Long and short of it though, is this
The incidence of HPV +ve oral cancer has increased from approximately 16% in the 1980s to approximately 21% in the 2000s. These numbers relate to ALL oral cancer.
HPV is not implicated in 72% of all oral cancer today. It is implicated in 72% of oropharyngeal cancer only.
These numbers regularly get mixed up due to the reporter/author being unaware that whilst all oropharyngeal cancer is oral cancer, not all oral cancer is oropharyngeal cancer. I have tried to illustrate an analogy before with "all leopards are cats but not all cats are leopards" with fairly pathetic success. Maybe someone else who sees what I am trying to say can elucidate in English.
A caveat: In my opinion, comparisons between the 1980s and now should be viewed with extreme caution. It is possible that the reason for the rise may be due at least in part to the medical profession's awareness of HPV and their subsequent testing for it in addition to or rather than, a rise in the incidence of cancer causing HPV.
Seems I am incapable of doing a short answer ...
Lets hope it was at least in English??
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#relatedConsumer 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.htmWhat 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.fullThe 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...
I did the same thing.. the Consumer report was actually quoted on Dr. Oz too - not once but twice. I was so peeved I emailed the show's producers and corrected them. ;o) kudos to you.