Having just come back from lecturing in Maine on survival, HPV status, and statistics on outcomes, I had a chance (with this post on my mind) to talk to other doctors who I regard highly in this environment. I feel more strongly about this issue now than I did before. Individual doctors at major cancer centers are using national standards of care for treatment drawn from experiences at major institutions, ie the NCCN guidelines. There are those doing things slightly differently, but most of those are related to clinical trial treatments. Anyone who thinks that every individual doctor uses the SEER data base for treatment planning of any singular individual is missing how it is used and what it was designed for. It has noting to do with treatment planning. It is designed to track incidence, etiologies, and end results from those causes. You can not draw treatment conclusions from it. It is designed to look at disease trends in America. The results from any search in it since it is a compilation of data from 19 collection points in a country of 300 million are far from exact. They are best guesses given the way that we collect data. Parsing that out to a single individual's treatment even by the best doctors would still end up with a probably, or likely idea, not an absolute idea.

That the calculator was based on at the time, good science, but it does not negate the factor that science changes constantly, and in our disease specifically that is highly meaningful. The advent of the HPV etiology, as just one example, is dividing the data it two different sets. Anything that does not consider that in its calculations is going to get wrong answers. Bias in data is rampant, and if not adjusted for, data coming out of good institutions is still meaningless. A calculator in our disease that does not adjust for HPV status is worthless. The last decade since that was created has seen changes in treatment modalities, and increasing knowledge of monoclonal antibodies which are highly useful in slowing down cellular replication speeds so radiation can be more efficient, better use of targeted radiation itself, a better understanding of pathways of metastasis, and mechanisms of it occurring, and more that I could list for another paragraph. All of which alter outcomes, and obviously statistics.

Personally unlike some others here, I did not find this conversation productive nor stimulating. It is a divergence from helping people with information that is truly actionable or comforting. Ron has said he will not post here again. He has his mind made up about what all this is regardless of the replies and thoughtful time anyone else put into the conversation, and if no one else gets that at the end of reading five pages of posts, this particular mind is not to be turned from a particular idea, so be it.

This forum exists to help people that are in trouble, that need emotional support. Physical and emotional support is what it is about. They have treatment related questions that we have all lived through and know now the work arounds that we can pass on to them. That is our reason for being here. Academic arguments by people of varying backgrounds, (few in medical statistics or the minutia of facts related to the treatment and outcomes currently being experienced in head and neck cancers, and specifically those of tobacco etiology, (which have unique nuances to them), as knowledgable as they may be, are incomplete and not useful or productive. We are not academics, and few have read the reams of published papers that do not make the more common discourse but do apply.

Having a long running argument with someone who has their minds already made up about the answer (for which there is not an ,absolute as it relates to them that is knowable) is a waste of time. I think we have beat this idea to death and am going to close the thread. There are people who are afraid, who are suffering through uncertainty, pain, clinical issues that many of us have found our way through that need our help. Let's direct our energy with an equal enthusiasm to them that was put into this thread.