Well this discussion is certainly becoming unattractive in tone.

I understand how to read the SEER database, and I understand the varied results it can give you depending how you search it. It is designed specifically as a depository of raw data, to be interpreted by a searcher given a rather limited number of variables to answer certain questions. I don't think that even the most versed researcher that uses the SEER database would ever suggest that data results from it offer any kind of absolute answer.

For the purpose of determining treatments, statistics in general are highly useful, they show what a majority of similar people have as outcomes given a set of known variables. But the point that I would like to make in this discussion is there is no absolute number for any given singular individual. In every clinical trial for instance, you many find that the majority of people responded well to something, and that is enough to recommend that the trial data be considered for moving the ball further down the field, such as expanding on the idea, giving it to more patients, whatever. But just because a majority of people, who are similar but not exactly alike, responded well that does not mean that they ALL did. Invariably there are some that seem similar, but for an unknown reason that did not have the same response. Obviously they or their disease, are/was not like very one else's despite the clinical trials desire to eliminate people with differences from the sample before it was even begun.

Herein lies the problem with the SEER database and others for trying to come up with some kind of absolute numbers. Good researchers often speak in ranges not singular numbers. The reason is that they want it understood that in this kind of thing absolutes are elusive. Despite all of our similarities, age, gender, ethnicity, pack years of tobacco use, stage at time of discovery and exact same treatment modality, (and more) there are different outcomes because we are all biologically unique. We can thank our grandparents for the genes that we have, most of which we have not figured out what different combinations of them cause (or don't cause), or what it means when some are active or silenced. Hence when dealing with unique patients, which we all are, no one can say with certainty that what applies to you applies to me. Any numbers derived from all this, point you towards a general statistically leaning, not an exact answer applicable to all. Only that something occurs to the majority, but not to 100% of people. What does that mean to you if you are not part of the majority? What good is the data if you want to take that sampling and apply it to a different population of people not in the trial? In all cases the answer is that we do not know with certainty, but we know what is likely for the majority of a similar population� not everyone. So again, how would you even know - if you are an outside population person - if you would have been like the majority or like the few that had a different outcome? You can't know.

I saw in an earlier post a reference to one Gillison article, who is my favorite, unbiased, researcher and friend in our arena of interest. She would be the first to say in her lectures, (which I am good a parroting, creating the illusion that I am much smarter than in reality) that facts that she will speak to on that day are best guesses from incomplete data. (No data is every complete and there is always something more that could have been added or considered) She is fond of revealing in her lectures where the bias in her data exists. That they were unable to control for this or that, and that certainly in any animal model (humans included) that the genetic vaiable does skew the data. Often times, particularly in lab rats, the data is better than in humans. The reason is pretty simple. We have bred generations of genetically pure lab rats for experimentation, and to some degree, genetic variation is not a confounding factor. As soon as you move into a human model�all that is out the window.

Lastly, and only speaking for myself, If my doctors had told me my survival statistically was improbable, or a very low number, how would that have impacted me. This is really the question. Am a buoyed by a high number and depressed by a low one? Probably, but what can I do about it? Will I/ did I choose to live my life any differently with my low number? In my case no. I figured I would make the best of a bad thing, and try to live in the moment more. Not such a "new agey" idea when it is actually happening to you. I did live a more present and richer life with friends and family. I reveled in things that I would not have paid attention to before cancer. I didn't live for the future or dwell on the past either� both previous wastes of my time that I wallowed in. I neither gave up and pulled the covers over my head, nor was obversely wildly optimistic. I didn't use the number to plan my remaining time, be it long or short. I just got on with my life.

I've never met a cancer patient that I have worked with in 15 years that did not ask this very question. As you can see I have no better answer for it today than I did a decade ago, in spite of knowing the science really well because I get to hang out with the best and brightest researchers in the world as a matter of my daily interactions for OCF. Oncologists that I talk to never answer this question for their patients, not the good ones anyway. It's because they know that anything they say will have a high probability of error, and that good or bad, their patients will not understand that it MAY NOT apply to them. So they say they do not know. They know that sometimes stage one patients die and stage four patients live long lives. And they do not know why.

So let me just say this. The "real number", or the actual number, or whatever anyone wants to call it does not exist. Statistics cannot be applied to a singular individuals with any kind of accuracy. There is no answer for this. When I tell people this, there are a certain percentage that are sure I must not know what I am talking about, and they will go on a many year quest tilting at this windmill. They will learn a lot for sure, but they never learn the answer to their question in any kind of real life applicable number. I wish all that find this pursuit somehow meaningful or useful well in their search. I do not feel this is a worthless expenditure of time FOR THEM, as obviously it means a great deal to them to have something tangible (even if made from gossamer threads of information) that gives them some solace or comfort. We all want that after having our time in this world almost taken away from us. But I am going to spend my days differently. That big ass truck with my name on its bumper, that heart attack that I didn't think I was a candidate for, that random event that I didn't duck fast enough away from is probably going to do me in anyway, and my cancer - now firmly in my rearview mirror - will play no part in my passage from this world. Whether my number was low or high, that truck just insured that it didn't matter.

Last edited by Brian Hill; 09-17-2014 07:20 PM.

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.