I have been searching and reading for many many months. I was looking for the survival stats on Oropharyngeal cancer. Specifically, locally advanced (stage 4-lymph node involvement but not metastasized to other organs-stays above the neck). HPV negative and 30+ pack years.

My oncologist says 70% 5-year survival rate. My research shows only about a 40% (less than 50%) 3-year survival rate and a worse 5-year rate.

http://www.oralcancerfoundation.org/HPV/pdf/NEJM_Gillison.pdf

Overall, not figuring in HPV status, pack years and the fact of it is locally advanced stage 4 (lymph node involvement on one side of neck, my doctor is correct (really lying by ommission because I asked him "what about......" and he did not respond.

Am I on track with this. Just what to know the true stats on my disease. Thank you.

Ron, Im sorry but off the top of my head I dont know all the stats about survival rates. Im not one to put much faith in the numbers as I shouldnt be here but I still am. One of our members who has since passed away used to answer questions like yours with..."you will either make it or you wont., stop worry about statistics and go out and live your life. Ive seen all kinds of scenarios here over the years. Some Stage I patients who seem to have an easy time wont get thru it while others who were Stage IV and even have had recurrences have survived.

You may try checking out the NCI guidelines or cancer.org for more info about specific percentages.

Ron, stats are just that -- numbers. They do not tell us where we will land, among the 30% or the 70%. When John was completing his radiation, his oncologist told me that roughly 2 out of every 10 people make have swallowing difficulty -- meaning to encourage me not to worry. Ironically, John is among the 2. It has taught me not to put too much store by stats.

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.

Hopefully you've stopped the smoking and drinking. here's another stat for you - people who continued to smoke through treatment - 95% mortality rate at the 5 year mark. Hugs

The night before I started treatment. Nothing since. However, I have been looking for the statistic you cited (really one that says I can resume my vices without risk of harm) but haven't found it. Where did you read that?

Ya know, you mention smoking and drinking like it is a bad thing. I do miss both very very much. But not nearly enough to risk the sheer delight of another round of chemo/radiation.

Ron, when you first posted I sent you a private message (PM). There is an important link in the PM. It will give you detailed instructions on how to add a signature. Its very important to have one to help us better understand your situation and offer input. Please add a signature as soon as you can.

Thanks!

The trouble with statistics is that we dont fall neatly into the groups they define us by.
Kris was HPV positive. He was supposed to be cured by the rads and chemo. In fact our ENT said that to him, " congratulations. You are cured" . 6 months later he had a recurrence .
The stats all scared the shite out of me. I now know that they do not apply to us. I now take absolutely no notice of them.
As Charm used to say, " you're either a survivor, or you're not".
Tammy

I can understand not wanting to know the stats etc. Me, I want to learn as much about it as I can. I just recently found out that the oncologists purchase the chemo drugs and sell them to the patients/clinics at a large profit. Interesting:

"Unlike other drugs, chemotherapeutics are bought and sold in the doctor's office � a practice that originated 40 years ago, when only oncologists would handle such toxic substances and the drugs were relatively cheap. A business model evolved in which oncologists bought low and sold high to support their practice and maximize financial margins."

"Oncologists buy drugs from wholesalers, mark them up, and sell them to patients (or insurers) in the office. Since medical oncology is a cognitive specialty lacking associated procedures, without drug sales, oncologists' salaries would be lower than geriatricians'. In recent decades, oncology-drug prices have skyrocketed, and today more than half the revenue of an oncology office may come from chemotherapy sales, which boost oncologists' salaries and support expanding hospital cancer centers."

http://www.nejm.org/doi/full/10.1056/NEJMp1109772

http://www.medscape.com/viewarticle/752801

[quote=ChristineB]Ron, when you first posted I sent you a private message (PM). There is an important link in the PM. It will give you detailed instructions on how to add a signature. Its very important to have one to help us better understand your situation and offer input. Please add a signature as soon as you can.

Thanks!

[/quote]

Signature ok??

Very good! Thank you!!!

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

Thank you.

I'm a bit like you. I probably read just about every stat I could find. I want to know the good, the bad and the ugly. It is difficult to get an exact figure, as you probably know better then me, due to many different factors like stage, even if stage 4, then is a,b,c, then the TNM, and they don't account for tumor thickness, nodes, ECE, PNI, LVI, and some are outdated figures, etc. etc, but you're on the right tract in the 40% range, non HPV, HPV positive changed everything. I even read 38% for oropharyngeal cancer 5 year rate at one time. I think I stopped researching, rather looking into, when I was down to the low teens, even 9%, figuring I could go no lower. I couldn't keep tract with all my different recurrences, treatments, and one of my surgeons said, I'm out of the medical books now.

Even though I knew some of the numbers, I never asked my doctors what my odds were, and they never said either. I guess they have no cystal ball. I don't know why, maybe since I don't ask many wether I can do something or not. I just do it, and figured if they were doing curative treatments my odds were still high. Only twice was I really given stats without asking, that was before and after. My ENT gave me informed consent to the risk of surgery, pre-op, which turned out to be 20-25% lower than my own findings, so was relieved about that lol. Then my RO gave me the risk of death having more radiation, 17% vs 70% of cancer returning by not doing anything. I told him more like 100% and then dying anyway with my background, and can probably figure which I chose.

The other thing with stats I look at is the positivity too. All our treatments, surgery, radiation and chemo are based on stats, and we follow them. I guess the ones which worked out best. It's a double edged sword.

I don't think I have any stats on file per say, but their out there. SEERS doesn't account for HPV, maybe only recently, and they are only from 9 different U.S. locations, but looked at them too, different abstracts, studies, and come up with all sorts of numbers. They include them anyway.

Good luck.

Thank you.

Hi here - I can't remember where I read the stat but it was a valid one. It had to do with O2 intake and exercise during treatment and overall survival rates of smokers.

Sadly our vices are what can kill us.. And in this case even moderation can be deadly.

Hugs

Here is a recent article regarding smoking, head and neck cancer.

http://www.independent.ie/irish-new...sk-of-head-and-neck-cancer-30527668.html

[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"?

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.

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=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.

[quote=Uptown]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. [/quote]

Thank you for the "chip" advice. Nevertheless, I came here and posted a question. Now your belittling my attitude. I will give your comments the attention they deserve.

[quote=Maria]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 [/quote]

Yes, I seen other facilities make similar claims on their sites. More like advertisements. Sure, the SEER data is what it is. Look at the link I posted in my first post. Very interesting how the author "used" the data. I am also interested in finding any info as to whether in-country Vietnam impacts. Also interesting is I came across something about John Wayne. He did a movie in Nevada at the time of the nuclear testing and an extraordinarily of those involved in the film died of cancer.

Cancer is big business now-overshadowing the prior revenue generator-cardiovascular disease. I expect we will see much bolder "ads" from cancer "centers" trying to draw business.

Here is a calculator.

http://lifemath.net/cancer/headneck/outcome/

http://www.cancer.org/cancer/oralca...-and-oropharyngeal-cancer-survival-rates

[quote=PaulB]http://www.cancer.org/cancer/oralca...-and-oropharyngeal-cancer-survival-rates [/quote]

Thanks. I saw that too. However it says "For cancers of the oropharynx and tonsil, the relative 5-year survival rate was 66%, but survival by stage is not available." So far the best info I found was in the link in my first post.

Thank you Paul for your responses. I will not post further on this board. Reading over and over again how the SEER stats are meaningless is tedious. But again, thank you for your understanding.

[quote=PaulB]Here is a calculator.

http://lifemath.net/cancer/headneck/outcome/

http://www.cancer.org/cancer/oralca...-and-oropharyngeal-cancer-survival-rates [/quote]

Oh boy. Did the calculator 41%. Better spend my retirement money!! Thanks.

I shopped til I dropped yesterday lol. I just did my info at diagnosis in 2009, but don't have a flash card with iPad to see all the graphs, etc. I probably did more looking into stats, numbers, after the fact. It energizes me beating the odds or whatever. I have this internal fight everyday to keep moving forward.

Breaking Bad Binge this past weekend, if you watch, had a good scene with Walt talking to another patient while waiting for their PET/CT scan. Some good quotes.

"Who's in charge? Me.That's how I live my life."

Stats are a melting pot, however - studies aimed at specific things (exercise while in treatment? Continuing smoking? Drinking?) Those are stats that are worth paying attention to because they are indicators of what you should do to try and help your own situation.

Paul, I have so outlived your calculator that it won't even work for me.

Not my calculator. I Never followed it. It's cool though.

We haven't had such a lively discussion since the "Peg Wars" which I didn't start lol. This one is called Prognosis Determination Wars! Only joking.

I also think as time moves on a person's thought changes, mine did. and some may not care to discuss as much now, avoid the subject, dismiss, change facts, depending on how far out from treatment they are. Persons with recurrences, up coming anniversaries, scanxiety, have smoking history, other illnesses, even being non HPV related have different thoughts too, making us all different.

Another quote from Breaking Bad:

"To hell with your cancer. I've been living with cancer for the better part of a year. Right from the start, it's a death sentence. That's what they keep telling me. Well, guess what? Every life comes with a death sentence. So every few months I come here for my regular scans knowing full well one of these times, hell, maybe even today, I'm gonna hear some bad news, but until then, Who's in charge? Me. That's how I live my life."

Paul,

Thanks for posting the calculator but I wanted to point out a couple things about its usefulness to today's typical OSCC patient/survivor.

The calculator is based on older data
[quote]The calculators are based on observed outcomes for cancer patients from 1987-2007[/quote] and does not ask for HPV status which we all now know is a factor that has significantly different outcomes.

Also asks for Extracapsular Spread which is an uncommon indicator most don't report or know much about.

I think I'd rather go to an online gambling site and determine my fate at the roulette game. LOL

It's not mine, and have nothing to do with it, and referring you to the disclaimer for use lol. I just added it to the conversation, which seems cool, and is not the first calculator I've seen for head and neck cancer. I think this is from Massacusets Genetal Hospital. I don't know what data it's based on, years, but it's the copyright that's from 2007-2011.

I guess one has to follow the legal terms or disclaimer for its use. Like gambling, it's for mature audiences only. Do I rely, believe on weather reports also, no. I would take it with a grain of salt, but there must be some criteria to their analysis, beyond my knowledge, interest.

http://lifemath.net/cancer/disclaimer.html

[quote=donfoo]Paul,

Thanks for posting the calculator but I wanted to point out a couple things about its usefulness to today's typical OSCC patient/survivor.

The calculator is based on older data
[quote]The calculators are based on observed outcomes for cancer patients from 1987-2007[/quote] and does not ask for HPV status which we all now know is a factor that has significantly different outcomes.

Also asks for Extracapsular Spread which is an uncommon indicator most don't report or know much about.

I think I'd rather go to an online gambling site and determine my fate at the roulette game. LOL [/quote]

I had to reply.

First, roulette odds suck. Try CRAPS.

Second, I used the calculator for the first time. I am shocked at your replies. It is based on hard science. Evidence based science. Based on the results, I have given what was left of my meager possessions to charity, bought a coffin and I am currently lying in it typing on my laptop waiting for my demise.

I bid you adieu!

Bon Voyage, Ron. I'm glad to hear the statistics were useful for planning purposes. LOL

Ron would really have needed his EFGR level and some of the other molecular markers to tune the prognosis. Even with that, prognosis is just a statistical guess - since many factors are not covered in whatever model you are looking at.

There are some interesting abstracts on the ASTRO 2014 conference site that deal with prognosis - including an alternate staging methodology for HPV+ oropharyngeal cancer developed with a RPA (recursive partitioning analysis) model.

Ron... you get wi-fi in that thing?

Ron, THere are two different issues in using statistics to determine treatment and using them to deal with patients. Every major cancer institution uses the NCCN guidelines to determine treatments for patients, Those guidelines are developed at the top 50 cancer centers on what is or is not working. This repy from you clearly shows that you think that individual doctors only use the SEER database to determine what they are going to do to treat a patient and you could not be more wrong.

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.