[quote=OzMojo]Wanting to know "our chances" is a very normal reaction. My research quickly brought me to the view that the data for things like 5 year survival rate are by definition historical. They don't reflect your chances "today", with the advances in imaging, diagnosis and treatment techniques we have available to us now. There are also less tangible variables that will impact your case against the statistical group you are comparing with.

I became pragmatic about the numbers. 80% cure rate I was given. That sounds high, but if that was your survival chances going to work you wouldn't go in on Friday!

There is not much point knowing that 15% of 747s crash after you're on board. What we really want to know is will THIS 747 crash! No one has the crystal ball to tell you that, its all a best guess on not just the historical stats but your staging, your age, smoking history etc. Its an educated guess, but a guess all the same. [/quote]

"...not much point knowing...." Sorry to burst your bubble, but the research AND the statistics are used to determine the treatment you are provided. You just do not understand statistics and how they are used.

[quote=tamvonk]Here in New Zealand none of the Oncologists/ medical personnel make any money from any of the chemo drugs.
Firstly, all health care is free.
Secondly all medication /chemo drugs are provided free.
Treatment methods/drugs used are chosen according to treatment protocols. All evidence based.
Tammy [/quote]

Sorry, but nothing is free. Someone is paying for the medication and chemo drugs. Who? The taxpayer. No free lunch. "All evidence based." Funny. In a thread that most posters are demeaning a cancer survivor for trying to determine the relevant survival statistics to his disease, you write that. Treatment protocols are chosen based on the results of the clinical trials and the use of STATISTICS.

[quote=Alpaca]Have you read "The median is not the message". A lovely essay and all about stats but also about survival.

http://cancerguide.org/median_not_msg.html [/quote]

I disagree. It is a very poorly written essay trying to explain the use of statistics and what they mean and do not mean. An inane piece written for an audience that does not understand statistics and the use of statistics.

[quote=Codojm][quote=Ron Silver]Thanks for the replies, but I am very interested in the correct survival stats. Specifically, the survival stats adjusted for HPV negative status, being a locally advanced stage 4 (enough lymph node involvement to be classified as stage 4), and smoking history (30+ pack years.) I found the "Seer" stats.

http://seer.cancer.gov/

Overall, a 67% (if I remember correctly) 5 year survival. But again, not adjusted for the "negative" factors cited above.

Nothing wrong with researching this issue or being informed as to the correct survival statistics for one's disease. Nothing negative about it. I endured the chemo/radiation/peg tube wondrous experience. I want to know the correct survival stats on my disease. Knowing the stats is not "putting much store by stats." I know what stats are-I have nearly 20 years of education and have taken college and graduate level statistical analysis courses. Maybe I need to take a course in how to get a straight answer from my oncologist!

What I found very interesting in my "journey" was finding how much the 5 year survival rate jumped up-by I believe over 20%. But reading between the lines, it appears the increased survival rate was directly due to the HPV involvement. I'm "old school" as I smoked and dranked my way to my demise. [/quote]

Does the recognition that cancer survival statistics are highly misleading, because of inherent biases, make your quest to know "the correct survival stats" largely irrelevant?

Despite that these statistics are very deceptive the American Cancer Society and other cancer charities have been hoodwinking the public with the use of these misleading statistics and the obfuscation of crucial cancer information for decades

Few people, including doctors, understand that survival statistic are not related to mortality data in any significant manner - perhaps that's why your oncologist can't give you "a straight answer"?
[/quote]

Thank you. I assume that the link removed was one to an "alternative cure" website. Who is that very very rich guy who died a premature death because he turned to traditional cancer treatments just a smidgen too late. Ya know, the Apple computer guy. Did you advise him also?

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.

Should the statistics have a significant impact on how one lives their life. Depends. I have read a number of articles asserting that doctors as a group (based on their responses), when faced with a cancer diagnosis, depending on the type and the prognosis (statistics), are less likely to accept treatment. I am sure you read similar articles. If you wish I will post a link. These doctors have access to the SEER data and know where to find it. Yet you suggest that the "good" doctors not honestly answer our questions? Really.

A doctor who is diagnosed with cancer and refuses treatment based upon the prognosis he receives, i.e., the SEER data, yet if I am diagnosed with cancer a "good" doctor will not share with me the SEER data. A "good" doctor. So I am not entitled to know what the SEER data says because I will not understand it.

That is essentially what you wrote. You wanna rethink this??

Ron, I think you have a point in all this. Maybe just asking the question you want answered will help get you there quicker.

[quote=Uptown] Ron, I think you have a point in all this. Maybe just asking the question you want answered will help get you there quicker. [/quote]

I did, more than once. My oncologist is not honest with me. I explained to him that my "research" indicates this 70% 5-year statistic is incorrect if one factors in the HPV negative status, 30+ pack years, stage, node involvement, and size of primary tumor. The $#%#$% just looks at me without commenting. I started this thread to see if anyone on this board's research also came up with a 3-year in the 40s and a worse 5-year. I posted the link in my first post.

Then you get dog piled for even mentioning the SEER date and statistics.

We all know that the statistics compiled from the SEER data cannot be construed to predict what will happen to you. The data was not derived from specially bred lab rats. Nevertheless, the data is valuable and is all we have. The point in my most recent post was in response to the arrogant post by Brian Hill belittling my request to know what the data shows. Doctors are more likely to refuse cancer treatment than non-doctors. Why? They have seen the effects of the "treatment" and have access to the SEER data. The know their prognosis. To suggest that we, non-doctors, should not be given the same information is absurd. I posed this question to a few other oral cancer survivors and no one agrees with Mr. Hill. In fact they have a few choice words for the position espoused by Mr. Hill.

Hi, Ron
to add to the confusion, prognosis in a specific case is also impacted by the quality of the institution and the adherence to the treatment protocol by the patient. I *think* I saw a Dana Farber institutional study that indicated either a 3 or 5 year survival in the 60 or 70 percent range for HPV negative oropharyngeal cancer - the research noted that their institutional results were better than others published. So, whose stats are 'better' - the SEER data that looks at a much larger number of patients - but includes those that had treatment at less experienced institutions and broke protocol, or a smaller study at a top-flight institution where, I would imagine, the patients had sufficient medical and counseling support to stay on protocol and the adminstation of the therapy itself was correct? It's not an easy question to answer, and I have taken statistics at a graduate level.
Maria

So your question is whether anyone else came up with 40+% 3 year survival rate or worse 5 year?

I was given a 23% 5 year survival rate about 11 years ago,based on staging of T2N2bM0.

Maybe a suggestion of losing the chip might help. No one here is out to "get" you. We've all been down a road similar to you, as a patient or caregiver. We have nothing to hide and nobody to trick. I can't speak for anything before you came here, but I can assure you no one here has anything but your best interests at heart.