Too early to publish data. You have to remember that it is only in the last year that they have actually started calling this a unique cancer, though it will always be grouped with other oral cancers. I can assure you that since I talk to her almost weekly, that pre-publication information will get to you all first.... What I tried to say to Tom in the last message was that while we have better outcomes from treatment, we are not seeing end results improvement. If this indeed shows survival advantage long term, the question will then become why? Is it a reluctance for this cancer to develop mets elsewhere? That I can through personal experience tell you isn't true. But it is generally believed as we speak of the 5-year number that the odds of recurrence in the same location drop dramatically. This is both from viral and tobacco induced cancers. It is more important as you get further away from the 2-year mark to start monitoring the rest of the aero digestive tract. I am now getting an upper endoscopy every two years. This started with GERD issues, but has been recommended to me as something that would be prudent. So at over 5 years now, I am more concerned with second primaries than I am for a recurrence in the original local environment.

Tom- I just reread my last post and I don't want to come across as some know it all, because I have stated many times I am still on a learning curve myself. I am just further down the path than some others here in a few respects.

I was contacted by the American Academy of Oral Medicine, which is a very small highly trained group of specialists (300) and I will be speaking at their annual conference in Puerto Rico next year as the keynote speaker. At that meeting I am told I will be inducted as a member of the Academy... the first non-doctor to have such an honor. I joked with the person that called me that they are so small and elite a group that they just must need more dues paying members. But he assured me it was because of my contributions to furthering the cause of early detection and awareness of a disease which while very survivable if caught as an early stage disease, has not significantly improved in end results (death rate) over half a century.

Well, I had a "smart a**" remark to make to Gary until I read Brian's post and that put me back in my place. Congratulations, Brian, and thank you for being in the right place at the right time. Amy

Brian - Congratulations on your upcoming induction into such an exclusive group! Well done and well deserved I am sure.

Clearly you have traveled a particular path of learning much further than I. And, I have great respect for your expertise and your willingness to share it with new folks - like me. All that sincerely said, let me take issue with you.

I do not share your easy dismissal of SEER data. "Guesstimating" from samples is what data mining and research are all about. Prediction is the whole purpose of research. SEER samples are, as you say, from limited locations, but they do come from a dandy variety of important locations across the country. They do not present their data as randomly gathered, or fully representative of national trends, but they have done a good job of correcting/adjusting their samples and analyzing their data carefully. The sample sizes are large enough to be trend significant and they do show improvements in survivability. These improvements may not matter to you, but they matter to those persons counted, and they surely offer hope in this 'hope-limited' club we have all joined.

Your apparent cynicism about research progress is well founded from your sources I am sure. You report that you have a seat on the Oral Cancer Work Group. Who are these people and how broad is the reach of their data? How do they keep up with research trends - or do they speak only from their own research?

And don't sweep away the recent research findings about cisplatins + radio. Though I cannot relocate the abstract (yet), a group of Korean researchers has isolated the protein mechanism of squamous cell cancers - causing some to become radio resistant, and thereby likely leading to disease metastisis and recurrence. This study may raise some important treatment issues and lead us to protein analysis of tumors before the tx plan is drawn up. This is potentially no small step forward.

Perhaps we could share your views if we knew where they came from. Perhaps your technical assertions would be more useful to us if we could see them in a context beyond the views of one committee or one treatment center. As you have said repeatedly, its very hard to see this disease on a broad scale. How then do you do so?

And no one here is challenging the need to find this disease earlier. Your obvious passion about this is, I am sure, shared by many among us. Your expertise and your passion are obvious cornerstones in this forum. Your assertions and technical language seem to sweep challenges aside. Please don't think me unloyal or ungrateful. Tom

I don't mind any questions of my comments. I am certainly not the final word on any of this and as stated have much to learn myself. But to be perfectly honest Tom, it is clear that you like the intellectual banter as much as the information. I am putting in 14+ hours a day on the road, or on the computer and phone for OCF. To educate you in what you do not know about the SEER numbers, takes away from the small amount of time I can actually spend on this board. It is not like in the old days when I could monitor the postings every day and posted more frequently. While I miss that interaction, I am only one person and there is a lot that I have committed to do.

But I will just toss a couple of things out there one last time. One, the SEER locations have not changed in more than 2 decades, even though the population of those locations has transformed drastically. To me this is a major issue, and it is to the CDC and NCI too, who are trying to keep up with the changing American demographics and what that means to the data. A SEER site which was urban and mostly white upper middle class individuals, is now decayed like many of our inner cities, and the population of that site is now black and Hispanic, with the accompanying disparities in health care and socio-economic issues. Couple this with a decline in the quality of the health institutions, schools etc. and I guarantee you that the data coming out of that area as it pertains to oral cancer, obesity, diabetes and much more has changed dramatically as well since it was originally picked as a data collection site 20 years earlier. The urban population that used to live there when the area was selected hasn't vanished into thin air, it has relocated, many times to an area that is not part of the very small group of SEER locations. What do you think the impact of this is? The collection of HPV data is not happening nationally via the SEER system. What implications do you think this has to the numbers? 3rd party payment has all but dried up in some of the collection areas as the demographics changed, what impact do you think this has? There is more to this than meets the eye on a couple of charts that you culled form the NCI web site. SEER numbers are guestimates, and nothing more...but they are all we have to work with. I will be a presenter/speaker at the American Academy of Public Health next week in Philly, and this is the very topic that I will be addressing as it applies to oral cancer.

As to the groups that I work with at the NIH and the CDC they are composed of many people, some private researchers at universities, some government employees with a science background, some doctors, and some bureaurocrats with no background at all. It is a diverse group. Like it or not (I do not), this group sets the direction and goals of the US health care system, defines where research dollars go, decides on what public health programs are worthy of implementing and being funded and much, much more. Is it the optimum system for seeing that things are done well? If you read my recent editorial you will get my view that I don't think these guys could find their asses with both hands, when a breakthrough study about oral cancer has been out for 6 months and they haven't even heard of it. That is why there are advocates like me on the group to piss and moan and push for what the oral cancer community needs.

I keep up with the current thinking because weekly I am in discussions or at meetings with the thought leaders from major institutions in teaching, treatment, and research. I work weekly with groups that are involved in the government, particularly various branches of the NIH such as NCI and NIDCR, I read from a clipping service as many of the new publications as can be practical while I am enroute to things, so if I have an opinion it has not been any novel thought of my own...I am not that bright, but I listen well. It is because I am at conferences, symposia, and in telephone discussions with the best and the brightest in the US on a regular basis drawn from all these sources, that my knowledge base has grown. I pass on portions of that here as I think it becomes usable. But my function is not to keep the members of this forum abreast of the details of everything that I encounter. (We have a news section in the main site for that.) It is like all the other posters, to try and help someone that has come here needing it. That purpose, while I try as much as possible to help people understand the things which are more academic when necessary, supercedes these kinds of discussions, which take time to elucidate someone that is essentially misleading the readers to believe that we have made some kind of significant strides.... we have not despite what you think you have found in the SEER numbers. As Nellie has pointed out, statistics including the SEER numbers have many biases in them, and any person can selectively look at certain time periods, eliminate some factors, etc. to come to any conclusion that they want...perhaps excluding that the world is flat, now that we have seen it from space.

And then you have the huevos to say if I would reveal to you the sources of my data (I suspect in minute detail) that I would win you over to my way of thinking. I won't even go there with what I am really thinking, but just look at your previous post. "My data is from the NCI" ( Do you think my postings hold data from different locations, or those without authroity and peer review systems?) What part of the NCI? What years? What publications? From which data collection systems - they have several- ( I could go on here, but the point is made...) and then you use the word "invasive oral and pharyngeal cancers" What - this data doesn't apply to those which are not invasive, or exactly what qualifies as invasive, and when did "invasive" start getting tracked by the SEER numbers, exactly what is considered invasive in the description you cite? 3 cells deep? Through the b-membrane? Into the surrounding tissues? Spread to the regional nodes? Jees!! You talk in generalities and then you want me to qualify my answers so that you can believe in what I am posting.... On this note, I have to with all due respect say; GIVE ME A BREAK!

Your point that guestimating from samples is what data mining is all about, is pointless if the data is out of date or being collected from sources which do not represent the group as a whole, (as in my SEER collection site example above) and that is exactly what is happening. Junk in - junk out. The data is skewed and the powers that be know so. I will take the liberty of mentioning someone in our group that is having a really bad go of things right now. This person had oral cancer, which became brain cancer, which became lung and liver cancer, which is now also kidney cancer. God forbid we lose him in the future, as powerful an example as he is to the will of someone to continue the fight and keep the spirit when things look dark. But should this happen, will he - in a SEER collection region - be listed as a death from oral cancer? Unlikely, though the primary disease that started it all was there. What if that disease original primary was reported in another state where he was first treated? What if the death certificate says liver cancer? Can you grasp the shortcomings of the system we are forced to work with? I am really tired of these statistical dialogs on this board. They serve no one.

Lastly, the research is changing daily, and I don't sweep any of it away as you suggest. But I am not fond of embracing the latest study, trial, trend of thought, (24 hour old published data) until it has proven out. Your examples for instance have no data on what is the difference to these people 5 years down the road. If they are all still dying in approximately the same time period, then the early gains found in the study are meaningless. Cancer does not lend itself to quick fixes, simple answers, nor generalizations, and every new clue that comes out of every little study, literally every day of the week is important as the puzzle is put together. But to pull out any one of them and put it on a pedestal will only bring you disappointment down the road if history is any indicator. Do yourself a favor and before you put this stuff out there on the boards look at the 15 years of data before platinum based drugs became the standard of care. This will give you a realistic view of what is really happening and even help you understand the current changes. Your frame of reference is too myopic in perspective. There have been THOUSANDS of little break through studies like the Korean one you mention. None by themselves has been the tipping point that changed the world of oral cancer. Even you said the word

I always find the discussion about numbers/stats and this horrible disease challenging to read about, here and in the clinical journals.

Everyone is different but for me I find I have the tendency to begin reading clinical journal articles on HNC- get depressed by the current ones that start with some version of "the long term prognosis for this group is poor" and usually keep reading until I find one or more that start with something like "this trial demonstrates significant improval in survival rates due to ( fill in the blank)".

That said, I'm very grateful to those hard-headed scientists and highly knowledgable lay people who continue to use every means possible -research, trials, statistical analysis,cross-disciplinary discussion/cooperation - to try and understand what the heck is going on and how HNC survival rates can be improved, including promoting ways of earlier detection.

Thanks to all of you on this site. You are truly wonderful.

Mary

I am quite willing to be the positive section of any trial... I WILL NOT GIVE UP MY RED WINE.. Cancer has taken enough of my quality of life..
i.e. chocolate and sweet things.
BEFORE ANYONE SAYS I'M BEING FLIPPANT..
I'm 57 years old drive a car, cross busy roads, climb stairs, use sharp kitchen knives, take dubious prescribed meds.. I also have Lupus and need daily steroids..
So I read the papers, study the statistic's, if I'm wrong I will only blame me.
My Dad was 85 when he died he ate only junk food, hated anything GREEN, smoked from being 12 years old. His lifestyle didn't kill him being in a hospital bed with ulcerated legs killed him..
No before anyone comes back with angry comments to me REMEMBER life is a lottery, and we are only the players in the game
I await your comments with interest...
Sunshine... love and hugs
Helen

Brian,

Thank goodness for this: "That is why there are advocates like me on the group to piss and moan and push for what the oral cancer community needs." Keep pissing and moaning!

In part because of my personality and in part because of my background, I find research on this stuff, including the limitations of that research, interesting. I'm just intrigued by science, basically, and by medical innovations. My grandfather was a heart surgeon at Columbia Med. school and he started his career back in the dark ages of medicine and kept up with innovations in his field into his late 90s. Knowing about the improvements he saw in treatments over seven decades(including ones he pioneered), I have quite an optimistic view of what medical research can achieve over time. Learning about new research on treating and preventing oral cancer feels like part of what makes the intrusion of this disease into my life bearable. It takes me out of myself and my own personal misery. But I know I'm a minority in this.

What I love about this forum, though, is the personal support I have found for every little hard piece of this battle, and the times when I have been able to offer some support to someone else. That also takes me out of myself and I agree that that is what the discussions here should mainly be about.

Nelie

Nelie - I realize that what you and what Tom say about continuing to learn and understanding the process is important to some. I also understand that none of us can know all there is to know about any of these subjects, and there is new information coming everyday, every hour even. Some, like you and Tom, revel in the new data, others are confused by it. You are better trained to interpret it knowing about bias and the actual nature of scientific publishing, but for others it is a maze of information with no road map. Look at the number of publications on whether or not coffee is good or bad for you.... hundreds and they still can't tell us for sure. That doesn't mean that the media do not pick up the stories and run with them every time something new comes out. In the end who has been served by it? I still don't know if I should be drinking coffee or not!

For some a statistic means hope, for others it means depression and loss of hope. We are all out of control once this hits us. In my own case knowledge and the continued pursuit of it gave me some sense of control as I felt chance favors the prepared mind. But I quickly learned that the small breakthroughs were not going to make any difference in my own case, that the protocols that were available (even at the best institutions in the world) change slowly and carefully, and my running to my doctors with the latest article I had found didn't change what they were going to do to me. I would love to understand this the way some of the researchers that I deal with do, but even they know only about their small corner of the cancer world and paradigm.

Neither Tom nor you are wrong in being curious, seeking answers etc. And certainly you have elucidated us all on the board again about the shortcoming of statistics and more. We have 20 - 40 thousand people on the web site at any given moment during our peak hours. In all likelihood they are not here because of any academic interest. There is a concern that brought them to the site

And when I asked my H&N surgeon why did I survive (expecting dome lengthly analysis on multiple variables and statistics) - he summed it up in one word "LUCK".

Helen,
you have brought red wine times on the forum. If you taking any hits it might br because some here have problems with alcohol. If you want to drink that's fine but it probably doesn't belong on the forum as it isn't information that is going to HELP anybody. I understand your feelings - I won't give up Coca Cola - but I don't consistently promote it on the site.

Since this thread was originally about alcohol and cancer, and it has traveled so far afield from there to become a rambling dialog of unrelated things, I am going to close it. It has been a day since I put up the gargantuan post about statistics etc. again, and it appears that people are willing to let the point die a nice, silent death. So I am going to close this thread. Anyone wanting to further discuss the alcohol issue, please start a new thread.