| Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Charm...as always my friend, You Da Man Yo!!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
Last edited by Charm2017; 01-31-2013 08:56 PM. Reason: deleted digression
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | 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?
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | 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.
Caco CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | 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!
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | 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 Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
Last edited by Charm2017; 02-01-2013 06:58 PM. Reason: added last lines
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | 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 Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | |
Forums23 Topics18,247 Posts197,132 Members13,319 | Most Online1,788 Jan 23rd, 2025 | | | |