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


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.