Hi,
I've just posted a story to the news section of the OCF site of an abstract of a journal article from the Journal of Alcohol and Alcoholism that surveyed all available studies relating to the continuation of drinking after a diagnosis of upper aerodigestive tract cancer.

The key result:
"Between 34 and 57% of oral cancer patients continue to drink alcohol after cancer diagnosis. Continued drinking increases complications from surgery, increases the likelihood of recurrent cancer, and reduces disease-specific survival."

The article can be found at:
http://oralcancernews.org/wp/clinic...sis-of-upper-aerodigestive-tract-cancer/

Food for thought! - Sheldon

As I sit here I am drinking a beer, I have continued to drink a modest amount of alcohol throughout my life and after diagnosis. Some here would say I am an alcoholic. Perhaps they are right. I don't think so. (don't start on the denial thing)

I am approaching the 5 year mark of survival. I resent the academics that cannot identify the certain cause of this cancer, telling me that my alcohol consumption will result in my demise. To me, it is their lame understanding and worse lack of detailed probing into the alternative causes that is why we have young and non-drinkers coming here as newly diagnosed.

My full opinion is

Do some reasearch that really affects the long term survival and/or early diagnosis and you'll have my attention. Until then don't bother me with this kind of drivel.

PS Absolutely none of this is directed at Shel.

Being an alcoholic myself I have some personal experience in this area. 1. You're only an alcoholic if you drink alcoholically. 2. Even then only the individual themself can make that determination.

There are statistics that would indicate a correlation with tobacco and/or alcohol consumption as causitive factor in as much as 80% of head & neck cancers and many other forms of cancer as well. Retrospective analysis is fairly straightforward. Is a beer every now and then going to kill you? I think not. Is 3 or more a night going to kill you who knows? I have also seen statistics that would indicate that total abstainers have a higher death rate than moderate drinkers. Go figure that one out.

Annual alcohol related deaths rival the total cancer death rate. Twice as many people die annually from auto accidents involving alcohol than the entire H&N cancer death rate. But now I'm getting off topic with non-cancer drivel!

For those of you who just can't break the habit, I wish to thank you for improving my statistical survival odds.

I went through Cisplatin chemotherapy to improve my survival odds a measly 13%. If quitting drnking will produce a 34-57% improvement - seems like a no brainer to me.

Absolutely none of this is directed at Mark.

Ssax - Interesting article. It would seem that drinking alcohol must take another hit. I suppose we could say the same things about chlorine or ammonia or valium - they are hazardous to health.

Alcohol. Your body doesn't need it, or make it, or even have a good way to get rid of it. It is toxic to all human tissues and has a profoundly negative effect on all nerves and smooth muscles. Your body must stop doing healthy chemical processes in order to perform the detox needed to rid the system of alcohol - in any amount.

Alcohol, like all mood altering drugs, is used because it changes the way we feel. Its only benevolence is that of anesthesia. Its too expensive to drink for thirst reasons. It just feels good.

I was the clinical director for the local alcoholism treatment facility for 20+ years here. My favorite expression about drinking: "Alcohol. It makes you smart." Tom

The husband of a colleague I work with was recently diagnosed with advsanced stage throat cancer and is being treated at Sloan Kettering. They immediately told him he should stop dirnking and stay stopped after treatment--nothing about its OK in moderation or anything. She was less than impressed by the folks here (whom they saw first before going to Sloan) in part because they said moderate consumption was OK (which is what my ENT told me).

I think the message needs to be clearer from all doctors, and maybe this study will do this, that no one can say for sure that moderate consumption is safe. I'm completely willing to totally abstain for the rest of my life if that's the case but if docs I trust are saying a beer or glass of wine once in a while is OK, it confuses me!

I have to tell you, I don't recall anyone suggesting moderate consumption of alcoholic beverages. I have heard that an occasional drink is OK, but not moderate. I had stopped initially, but now I will have a few drinks a week. This is not a daily thing, just occasionally. MSKCC will always take the safe position on things such as this and I almost admire a doctor that will say, sure have an OCCASIONAL drink if it does not bother you. I read that it is 34 to 57% of H and N patients continue to consume, not that your prognosis will improve by this amount if you do not. Anyway, that will be my post for the month and none of this is directed at any of you.

Glenn

I guess it depends on how you define moderate. To me, a few drinks a week is moderate (and this is what I asked my ENT about). To me, occassional would be a drink or two every two or three weeks. But that's just my subjective definition! Probably subjective definitions are part of the problem here....

Several years ago, while I was caring for my mother, our Internist[MD] suggested I drink a glass or 2 of wine before going to bed at night[I was having trouble sleeping and wanted sleeping pills]
Said that's what he did to unwind when he was not on call. This is a very interesting subject.Amy

This thread is fascinating to me for a few reasons.

I have never consumed excessive alcohol, even as a teen. Being 36, I couldn't believe the diagnosis especially since I've never smoked.

I would enjoy a glass of wine maybe 5 times a month, and sometimes go 2 or 3 weeks without any.

We live smack-dab in the heart of California's wine country, and in less than a year had to try to become psuedo-wine-affectionados (sp?).

So, I asked every Dr I talked to about the connections, and almost everyone said "bad luck". But, without exception, each said to not smoke or drink in the future to increase survival odds.

Now, I can't stand to even sip a glass of wine, and can't get near a scotch.

The burn and pain, plus the horrible tastes make it impossible.

So, problably for the better anyway, but sometimes I wonder if everyone has the same effect.

I know there are hundreds hit by this disease that are much younger and have even less risk factors, so I don't think we know all the facts yet.

A glass or two of wine 5-6 times a month was basically my consumption prior to being diagnosed. And we're right on the edge of upstate NY wine country and over the years I had gradually been getting into finding local wines I liked.

I haven't tried drinking any kind of alcohol since radiation--I'm sure it would hurt my mouth--even biotene mouthwash still stings one spot on my tongue but I do smell and savor the smell of wine when my husband has a glass. I think enjoying the smell will do me just fine and now when we have guests who want to tour the vineyards we won't have to argue about who is going to drive!

The way I look at the consumption of alcoholic beverages is that I had plenty in my pre-OC life, and now that I never want to go through THAT again, it is Gary's "no brainer" to abstain. It is one of the few things I am sure are connected to OC over which I have control, the other being smoke and smoking. That said, a former OC patient friend and I have decided that if and when we are definitely terminal, there will be much partying with banned substances (grin). I can wait.

Here is my treatise on why this study is annoying to me.

The known statistical information about SCC recurrence is that overall 65% of patients with locally advanced cancer will experience recurrence. These numbers are average across all ages and socio-economic factors.

Recurrence is an awful word because it is not absolute as to how a

Hear! Hear! Mark, stay on the soapbox

Cheers!

Tizz

"Life is a sexually transmitted disease which invariably results in death"

I agree with Mark on this one. As a matter of statistics (God are we really going here again!!) 75% of OC's are tobacco related, and that is well documented. However the number that were exclusively alcohol related is unknown. The vast majority of the time alcohol is a co-factor and not the mutanogenic agent. The method of action has been discussed here before and is also discussed in the main body of the site. High alcohol consumption has the ability to thin the cell wall membrane, in this case the oral mucosal tissues. In smokers, this makes the transference of tobacco combustion carcinogens readily able to access the cell. The relationship of HPV to oral cancer is a far more prevalent CAUSATIVE agent as well as a facilitator and co factor in many cancers (not only oral but even uterine and breast) than alcohol is according to new data. The issues of lifestyle in relationship to disease in general are a touchy subject - but it has been clearly defined that individuals that have poor lifestyle habits, which include poor eating habits (high fat, few vegetables), obesity as a result of those habits to excess, smoking, excessive drinking, little exercise and more, all contribute to higher disease of all types in that population of people in general - not just in cancer. It is also well known in the dental community that people that have two or more of the poor lifestyle choices also don't take care of other parts of their body like their teeth and gums.

The secret to all this is everything in moderation in my opinion. Just as exercise is vital to good health, obsessive, excessive exercise is destructive. Balance in all things......

As an aside, no one here has mentioned the medically reported health benefits (cardiac) related to a small regular consumption of alcohol.

Abstinence from alcohol for those that are unable to drink in moderation is, as many who have let it take over their lives to the point of destruction, self evident that that person needs to find a mechanism to bring things in line. Addictive behaviors are a separate issue from what we define as precipitating factors in recurrence, which regular readers here know I think is a misnomer in too many cases. Surgical only solutions to oral cancers leaving micro-mets which blossom 18 months later are too frequently named recurrences rather that incomplete treatment as they should be. There are legal ramifications to this which often end up in court. The bottom line is that we cannot with certainty TODAY state how many are actual recurrences, how many are incomplete treatment results, and how many are secondary primaries, and lastly how many are the consequence of continued cancerization via patients who continue down a bad path, or field cancerization from original causes. I brought this study to several of the OCF science advisors, and the common statement was that from a methodology perspective the study has flaws.

Lastly, one of the authors is a personal friend, Terry Day. The authors acknowledge that ALL studies (that includes those with small populations or from small institutions etc.) were included in this overview of the literature format paper. We all know that small population studies are not worth the paper they are written on. Remember the 19 person study on dental tooth whiteners causing oral cancer (19 people in total)? Please note that if you did (before June of 05) a retrospective literature search and published a paper on whether oral cancer screening works or not in reducing the death rate, (something that we all know works because disease found in early stages has better long-term outcomes), would have found that there was no scientific evidence that opportunistic oral screenings would produce any positive benefits. A POINT WHICH UNTIL JUST RECENTLY THE CDC HAS USED TO AVOID PUTTING ANY MONEY OR EFFORT INTO ORAL CANCER SCREENINGS IN THE US. There just are not a lot of studies on alcohol consumption by post treatment oral cancer patients to draw from. Personally I think drawing conclusions from an area in which there is little published peer reviewed data is a problem. Also this study offers no concrete recommenedations...like what is acceptable (in these doctors opinions), or what is moderate, excessive, etc. It leaves way too much to be desired, and with all due respect to my friend, I believe that the drive to publish in the medical community often leads to preliminary and often contradictory publications. Also please note that this was not published in Lancet , NEJM, or JAMA, it was published in a small alcohol specific journal. It is unlikely that it would have met the requirements to be published in one of the major journals. When you evaluate the many, many articles that are published, there is much to consider in the weight that you place on the statements and conclusions made in them.

Just a statistician's comment on research using small samples.

Small sample studies are not always suspect just because the sample size is small. For example, if the sample can be said to represent the population in all regards and if they find a statistically significant difference between two groups (e.g. drinkers and nondrinkers), that isn't necessarily suspect, in fact it's more impressive that they found the difference with a small sample--the difference must be a more sizable one to be detected (although NO finding should be taken too seriously until there is some form of replication--repitition-- of the results in another study).

Where small sample studies really fall down is when they find there is NO effect of something (eg. oral cancer screening) because with a small sample size, there can actually be an effect that doesn't come out to be statistically significant because of a lack of power (power grows as sample size grows) to detect the difference. One should always be suspicious of concluding that there is defniutely NO effect of somehting and basing policy on that unless the sample sizes are quite large.

There is a statistical method called meta-analysis which statistically combines results of small sample studies to increase power to detect an effect overall, and it's often used when there is controversy about whether an effect exists or not (such as there seems to be with the effect alcohol on OC). Was this study a meta-analysis? Because, if so, that is a little more convincing than a simple review of the literature, which really can't tell you much.

But even metaanalyses are only as good as the data that goes into them. If some of the studies they used were flawed, for other reasons than small sample size, then even if it is a meta-analysis there can't be any strong conclusions. Then of course there is the fact that none of these variables can be randomly assigned. It is indisputable that people who drink more than a small amount are also less likely to take care of themselves in other ways, as Brian said. Although these things can be statistically covaried out if they are measured.

But I'm not 100% convinced that alcohol only acts directly on oral cell memebranes in being a co-factor for oral cancer. It seems like the truth is we just don't know enough to know all the ways it could affect things. I just read an article that found that alcohol consumption was also related to recurrences of breast cancer, at least for post-menopausal women. So maybe there's something else at work there too.

Brian, do you happen to know a citation for the relation of HPV to breast cancer that you mentioned? I'd be interested in reading more about this.

Nelie

Those are very good points, and certainly elucidate us on one of the various issues with conducting studies. I guess my personal prejudice against small studies is apparent. Lack of elimination of other factors is a bias that flaws many studies, but certainly there are many great examples of meta studies that were of extreme value. But I still believe that those studies are only as good as the FACTS and conclusions drawn in the included studies, and can be flawed by poor prior scientific methodology. Meta analysis must take care not to introduce its own bias in the author's selection of those prior studies that support the conclusions that they would like to come to. Case in point are many of the studies done by the tobacco industry which reviewed only those prior papers (many funded by them) that reached a conclusion that they had a preconceived notion that they wished to reach. Bottom line is no single study is worthy until the conclusions can be repeated by other independent investigators, and all bias removed from the study itself. Since Nellie is someone who understands this more deeply than I, would you please post a reply that explains bias and some of the forms that it takes? I think it would help everyone, especially those that routinely review the studies that we publish in the news section so that that can make intelligent decisions about what they are reading.

The evidence was only recently found at Johns Hopkins and the information surprised everyone since it was completely unexpected and was a by-product of them looking for something else. The article is to be published in the next few months, and I will put it in the news section of the site when it comes out. I had a chance to review a preliminary copy from Dr. Gilllison one of the co-authors.

In my opinion (which isn't always worth that much) I have seen so many small studies, that were poorly funded, and following that, poorly populated, and following that, had poor elimination of other factors which may have induced the same outcome that were not measured or even considered, I find many of them suspect. The bleaching study that I mentioned above, didn't even ask the two people who had developed oral cancers (with the only apparent commonality between them that they used tooth whiteners) if they had been tested for HPV, an already established causative agent that they would have no way of knowing they were positive for as people in their 20's who never smoked or drank to excess. This was by one of the most prominent otolaryngology professors in the US publishing!! The conclusion that whitening agents were the causative factor when one of the KNOWN causes was not even explored, was a mistake of huge proportion. But now the myth of whiteners and oral cancers is fully embedded in the public's mind and I get an email about it every week.....

The inability to eliminate other causative factors makes it easy to publish a paper which reaches a conclusion that something "needs further investigation", but by the time that last sentence is read, the masses have been exposed to the faulty studies sensational claim. That was exactly the case with the study - every major paper in the US picked up the story and ran with it...but guess how many looked at it carefully and thought about the lack of looking for alternative conclusions (HPV) or used the sentence that it was a preliminary finding and needed further looking into...none. Meta-analytical techniques are of great value when the need to establish repeatability is considered. A review of 12 different hospitals experience might be proof that even with different surgeons, different facilities, but the same population characteristics of patients would all have a similar outcome, validating the procedure, even when used in different environments by different doctors of varying skills.

I like this technique when you look at something historically over a protracted period. A retrospective look at cervical cancer death rates from a period of 1948 to 1958 would show a dramatic almost 70% reduction in death rates. That data would be partly assembled from a variety of sources since the SEER system was not fully implemented at the time. The FACT that the death rate dropped would be established from numerous sources, but the causative agent was left for another publication and study

Brian, I'd be happy to post an explanation of bias and the forms it can take but you'll have to give me a couple of days. Between family coming for Thanksgiving and sleeping a lot during the end of my breast cancer rad the past couple of weeks, I'm way behind on grading for my online class. Writing something about bias sounds like a lot more fun, quite honestly, but also something I'd want to spend some time on wording well, and duty calls first.

Thank you for you willingness to do this. When done I would like to not only have it here, but to find a place for it in the main web site where we can talk about the conflicting data, preliminary data, and understanding publications in general, so that patients and their families will have some sound basis for navigating the huge amount of enformation that is out there, and being added to every single day. I am not qualified to write it and your willingness considering the load that you are already carrying, is greatly appreciated. Clearly you must deal with first things first, and that is your own health.

Statistics aside, for quality of life reasons I would like to enjoy a social glass of wine or beer but cannot because it all tastes like vinegar to me.

Love from an abstemious Helen

What a great thread! One of the subjects I teach is social research. We have a wonderful saying about research numbers: "Statisticians use statistics the way a drunk uses lamposts - for support, not illumination." Try as we might, we cannot make numbers tell us only what we want to hear. Those who drink will always cite the numbers that support that. Tom

hmmm, as someone who has taught statistics and research methods for years too I have to say, it isn't statisticians that do that (most statisticians are well aware of the limits of the methods they use as well as the principle of garbage in-->garbage out), it is the researchers who've had a single course or two in statistics (or less) and then go on to use them.

Statistics can be very illuminating if used in conjunction with good research method since good research methods and the scientific method in general are based on AVOIDING the confirmation bias (finding what you expected to find).

But maybe I'm not understanding the context in which you use that saying, Tom.

Wow. Great post.

My comment.

I used to drink/smoked alot when I was younger but pretty much stopped when my daughter was born in '95. Eight years later I was diagnosed.

My personal opinion was/is.

I beleive that you are pre-disposed to this.

Certainly there are 75 yo men and women sitting in a tavern right now chain smoking and drinking scotch. And they have been doing that for 40+ years. Why not them?

Well, I beleive it's in the gene pool. My mom, uncle, grandmother, and great grandmother (same side) all had cancer at some point in their lives. Uncle died from it.

I would love to see a real study based on people that never smoked or drank and their family history of cancer. I think that would be interesting.

Gotta run
-r

And visa versa Tom. You stated that you had spent 20 years as a clinical director in an alcohol rehab center. With that background and having seen the horrible things that alcohol can do to people, I can understand your abhorrence. However, not ALL people who drink are alcoholics as you imply.

You can pit this study against the one that says a glass of red wine a day is good for you. Which will kill you first? The heart attack you get because you don't drink it or the cancer you get because you do? I'll drink a toast to life with Helen.

Eileen

Nelie - That saying about statisticians is partly tongue in cheek (so fitting on this site), and partly to say: Research invites bias. Most research is as much political as it is scientific - funding sources, accountability loops, peer reviews, referees, publication rights and more. Data about a thing is only a map of the thing - not the thing itself. Understanding the data does not lead to real understanding, just description. Setting a description onto paper forces the author to limit how much is said. Good journal work requires summation, abbreviation, encapsulation. A map does not illuminate understanding, it only gives dimensions. Statistics, powerfully descriptive though they may be, trick us into limited understanding and invite bias.

None of us in this forum listened to the odds of our survival. H/N cancers killed most people until quite recently. Statistics about a particular treatment only describe the experiences of a few - and never the experiences of one. The numbers give us indicators, trends, directions of change, possible relationships between variables, ideas about what is happening. They do not illuminate, explain or describe how one will be. Data from the clinical trials of a new chemo drug do very little to describe or predict what my experience with that drug will be - just a well educated guess. I cannot understand that drug for me from the data, only from my experience with it.

And Eileen - forgive me for implying that all drinkers are alcoholic. They are not. But a powerful number of them are and most of those deny this, and deny that alcohol causes them any problems. In all my years in the treatment business, I never met an alcoholic with a drinking problem. Lots with money, or wife, or job problems, but hey 'there's nothing wrong with my drinking.' Hiding behind the rare but visible "gutter drunk" image, lots of drinkers explain away their drinking behaviors as not that bad. Ok. The National Institute of Alcoholism and Alcohol Abuse estimates that 10% of adults in our culture have serious drinking problems. Subract out the abstainers, and that leaves lots of folks impacted. We all defend our own behaviors. I had an MD tell me (with a straight face)once that his definition of an alcoholic was anyone who drank more than he did. nuff said. Its all relative and I'm ok. Thanks for the clarification. Tom

Tom, This is not the place to get into a debate about what scientific research can tell us but I strongly disagree with your overall view and I'm disappointed you're teaching students to throw out the baby with the bathwater since my experience is what they need to develop is more critical thought to distinguish where the baby begins and the bathwater ends.

That said, if you knew my history in academia you'd know that I couldn't agree more that sometimes research is political. But statistical and research METHODS are not political at all, the social structure around them sometimes is. And in fact when the scientific method, statistics and the peer review process are working correctly they eliminate bias and politics that are inherent in other less formal methods of arguing that ones beliefs are objectively correct based on anecdote or more subjective methods. Furthermore, research results are often about way more than description. At their best, especially in fields like medicine, theya re about causation and, eventually about control (prevention of disease and death).

Whew :rolleyes: It took a whole glass of wine to get through all of the above. Amy

Nelie - Well said. Be assured that you need not protect my students. We teach nothing close to the absolutes of babies tossed with bathwater. Critical thinking is the very heart of the matter.

This began with a few 'stranded' statistics about the "causes" of H/N cancers. My fear is that too many people read a statisitic, or a table filled with numbers and thereby feel fully informed - the romance and importance of numbers in action.

My issue here is this: A study about drinking behaviors in relation to cancer is not necessarily helpful to a survivor trying to make a decision about drinking. So many factors play in this complex issue that real controls for bias would be extremely difficult. Rather than choose a new behavior from this study, I would prefer the reader find additional studies before making a personal decision.

The presence of qualified researchers and lots of impressive tables in one study - any study - is likely not going to fully inform an individual's decisions. There is too much respect given to statistics by people who may not understand them. Proof of this is in the highly specialized process of peer review. Science among scientists is wonderful. Raw science in the hands of a non-scientist is an invitation for mis-interpretation and potentially poor choices.

Thank you for clarifying these issues for me. I learn everyday. Tom

O.K.- not trying to be a smart alec here- but I got to ask this question. If John, who loves beer, abstains from now on, or dies from a heart attach after eating all he can to gain some weight back, or is killed by a drunk driver on his way home from work, where will he fit in the statistics?

The SEER numbers track disease incidence and deaths. (Surveillance, epidemiology, and end results) He would be counted in the incidence (if he is in one of the 13 target areas they collect data from that are then extrapolated to estimate the entire US), but he would be counted in the type of disease that he died from, (if not oral cancer) and not at all by SEER if it got hit by a car. (Though that data is collected by other agencies)

By the by, while this study has generated an interesting thread, I stated early on that I thought it was worthless. And while I disagtree with Tom on some alcohol issues I totally agree with him that anyone would be badly informed assuming that ANY given study was the final and sole word on a particular topic.... and even if it came close, in the world of cancer our knowledge base changes daily, yesterday's study seldom carries significant weight down the road as new research leads us down novel pathways.

"Rather than choose a new behavior from this study, I would prefer the reader find additional studies before making a personal decision."

I completely agree with this .

Nelie

So how many of you have gone back to smoking pot?

Danny G.

I'm a control freak, so I'm off of it all..... but there were a few days in Vietnam when we rotated out of the field back to a rear area, that I passed around a fat one.... and listened to Jimi Hendrix tapes... Seems like a lifetime ago. Hell, it was!

I feel somewhat responsible for this exchange. Tom, I have yet to say welcome so WELCOME! I appreciate the different views and well thought posts. I also appreciate your sense of humor that I have seen in several other posts, and your observations in other subject areas.

I base much of what I think on what real-world observations I have made, statistics are a very small part of that. What I do notice are statistics that don't seem to jibe with the real world. Whilst I have very strong opinions in several subjects, I do keep an open mind (weather anyone here sees that open mind

Mark - Thanks for the welcome. I fear my love of spirited discourse may prompt me to badgering. Nothing incites dialogue quite like an opinion.

Alcohol is an important part of our culture and has been. Its use is social, ceremonial and medicating. Most drinkers never approach dangerous limits, and rarely allow alcohol to put them in bad situations. Drinking is important if for no reason other than its long history. Most folks drug in one way or another - there is no sense in avoiding the relief it can offer.

But the drug that soothes one, may not soothe another. Alcohol for me becomes the tail wagging the dog very quickly. I choose to speak against it only from my narrow ledge of experience. I do not judge the drinker. My wife and friends drink without incident for them.

My slogan about 'alcohol makes you smart' is only a reference to alcohol's impact on judgement. All people make poorer choices when they are drinking. Its not a value comment about those persons who include alcohol in their lives. Alcohol impaired choices can generate horrific human tragedy - even upon the social drinker. Perhaps I have seen too much of it. Treatment workers tend to get passionate about it in much the same way highway patrolmen are passionate about seat belts.

For our puposes here, alcohol is more friend than foe. It is an aid to most who use it and may make substantial contributions to comfort and well-being. Vague definitions make any study about drinking very hard to utilize. It is my opinion that those adults who find ease and comfort in alcohol use should be very, very slow to give it up. One study or another, one passionate old social worker (me) or another should NOT be a reason for change. Tom

Tom, spirited discourse happens here! Not often (but sometimes) all the feathers get ruffled. We usually have a group hug and all is well. This thread hasn't gotten even close to heated so badger away if you feel the need. Frankly, sometimes it is good to stretch the mind away from the fact that this is a cancer forum.

If you are inclined to talk politics (as in red state blue state) Pleeeease don't. That is one thing that hasn't happened in the three years I have been here. :rolleyes:
I am absolutely certain I'd be shot at by several otherwise good people here if I went into politics.

Actually I am wondering what Sheldon has been thinking about his innocent post that started it all.

Tom,

While I strongly disagree with you, you have not seen anything yet. This place gets sick when we have a real disagreement. This time I wrote 5 different replies and I have kept them all, it's the new me.

Hey Brian, a fat what? Jimmy who? What are you guys talking about? I'm very confused.

Anyway, Merry Christmas to all..........Oh no! Can I write that here?

Glenn

Amy, that was, without question, the funniest comment you have ever written.

Mark,

As far as this quote of yours: "Data in, statistics out. In life rarely is that the end. There is always a human that wanted the statistics and they probably had a reason for wanting the

Nelie, Business and Politics!

Ultimately someone has to pay for the study and even scientists want to get wages. The challenge I see is that pure science is very slow to think outside the box or be creative (and that may be better for pure statisticians). Private enterprise has to get there faster, better and more profitable. So they do what they can.

Glenn, I have a file folder filled with just those kind of replies! Perhaps we have the makings of "OCF Outtakes"

Actually my file has also got several letters to my customers, suppliers, editorial staff at the local rag (newspaper), certain family members, etc. I think it is healthy to type them, read them, then tear them up and throw them away. A wise friend of mine does this every new year: on a small piece of paper, writes the name of anyone that has wronged him in any way along with what ever they did. Then one evening, starts a fire and one by one throws them in the fire never to be considered again. Very theraputic. (and for some, a serious fire hazard)

Nellie makes a good point about the journal. Each has its own standards of review, and some have almost none. I mentioned this originally about it not being published in Lancet etc.

By the by while we are talking about all this, I have been having a heated discussion with the CDC for 4 years now about the value of implementing a screening protocol and guidelines here in the US for oral cancer. To put it mildly, they have shown no interest in putting any money into this despite the fact that any treating oncologist will tell you that early staging (early discovery and diagnosis) yields better end results. This is particularly true in cancers in which conventional therapies like slash, burn, and poison work well which OC definitely falls into. (They hate to see me come each year to the oral cancer work group, which I have a seat on.) So finally we have this ground breaking study published in Lancet (see the news section) with 170,000 people in it, over 10 years long, and the group that was screened for oral cancer (50%) had a 30% drop in mortality vs. the non screened group. This is finally the publication that I thought would get them off their asses. So I call the guy up 5 months after publication (June 3, 2005) and the head of everything dental at the CDC hasn't even heard of the study. I went ballistic, and it wasn't pretty. Their charter is exactly to protect the health of American via the implementation of guidelines etc.... So the guy calls me back the next day after he reads it and he says, "We've looked at it, and it has some serious flaws. First, half the screeners were not doctors." I said you have to be kidding me

Mark,
I can't help it, but when you talk about the intolerance toward alcohol from those around you, (which by the way I don't see...the opposite it seems is true...people are always offering me drinks and surprised that I barely drink at all) your arguments have a similar ring to those made by smokers who are mad about the restrictions that society is finally ( at least in the U.S. ) placing upon them. Smokers do piss me off. They can blow smoke in my face when I walk into a building or totally pollute a bar or locker room, and then complain when a little old city ordinance kicks them outside. Hell I'm fighthing for my life, I think, and you are sitting there sucking down those awful things and making me, the self righteous cancer survivor have to breathe it as well.

However,I have no axe to grind with alcohol.(although it did piss me off when my ex just had to have a couple every night ). If it made me feel as good as it does you, I would drink the stuff myself. For me it has always been a kind of depressant. It must be my Jewish genes or something...the stuff just does not agree with me. However there was a period during my recovery where I learned to really like my vicodin. Fortunately I never got hooked on that stuff.


Interesting thread from all you intellectuals.

Danny G.

Brian,

What an excellent (but discouraging)example, of good science being surrounded by biased humans who process the science.

Back when I was in a far more "publish or perish" environment than I am now I have to say that every peer review process I went through as an author or co-author there was always some comment from SOME reviewer that I thought was totally off base and I had that "you have to be kidding me" reaction. How one responds to that kind of thing is DEFINITELY the political end of the scientific process if you want to get published but also, apparently, if you want your publication to be considered in making policy decisions!

Nelie

Mark - I promise to keep my political opinions to myself. And I won't have ANYTHING to argue about if you guys keep taking my side of the banter about bias in statistics! Don't make me start talking about how dependable nubers are....

Glenn - Don't suppress those disagreements. Didn't your mom tell you that suppressing your feelings is bad for you!!?? (Also, running with scissors is bad.) I would enjoy hearing your views.

There is a wonderful book about bias called "In A Different Voice" by Carol Giligan. She makes a strong case about how many of the things we see and do contain invisible bias that truly directs the outcomes and conclusions around us - mostly unseen. Its a good read and worth the trouble. I wish statistics were ONLY used by scientists who understood them - but they aren't. The daily papers are pocked with tables and graphs, assertions and conclustions filled with numbers snatched from some well-meaning number cruncher.

Here you go: "80% of college students are on drugs, 62.5% of men secretly want to learn ballet, 50% of fourth graders are on diets, and a clear majority of people in Kansas believe the world to be flat." "Without the math or math references, these comments are just silly. With the magic of the numbers in the them, they invite scrutiny and evaluation. If I see one I want to believe in there, I will. (I KNEW Kansas was dangerous!!)

Please rescue me from the linear/sequentials of the world who want our understanding of people to come from math. As a cancer patient in treatment, I began to feel like a bucket with an interesting bug in it. So impersonal, so wrenching, so humbling to be the bucket.

Blood counts, cc's of this and cc's of that, rads, and hours, and pounds and calories. It was hard to be more than my numbers. I accept the importance of the numbers (steady Nelie)and appreciate their role. But those numbers didn't then, and don't now explain my experience. If you only saw the numbers, you didn't really see me. You could know my numbers and still not know what happened to me. Look at how we sign our names here....

Counting drinks means little more. Need a statistic to support your social drinking? Here is a good one: "85%", or need a statistic to justify not drinking? I have one for you: "91%". Contact me if you do not see the number you need, we have others in stock and available on short notice. Tom

Tom,

It all depends on what you want to understand, for example individual experience or what happens in general. Have you read Ken Wilbur at all? There's more than one type of knowledge about the world and more than one criterion for what counts as acceptable knowledge as a result.

Truthfully, I'd rather my doctor understand as much as he/she can about my cancer (I have had two cancers and two primary docs for each), including the statistics in general for everyone with the disease and for the success of different forms of treatment, the physiology of the disease, the physiological details of my particular case and what treatment will work with me, his/her patient's experiences in general, my experience in particular, how his/her interaction with patients affects their experience and how his/her interaction with me affects me.

Obviously statistics and knowledge collected using the scientific method would be of help in some of those forms of knowledge and of no use in other forms. Fortunately it's not really such a dichotomy as you are making it. Some of us can call ourselves "quant. jocks" and still understand that not every question can be answered that way and value the place of qualitative understanding as well--and use those other methods where appropriate! There is no inherent dichotomy between one or the other form of understanding, contrary to a lot of useless raging academic debate, unless you buy into the idea that everyone who can think linearly and abstractly enough to undertand statistics lacks empathy and creativity and has no other skills.

And as for my docs, I hope they really see me as well as the numbers, but in many ways I care more that they are skilled at the scientific end of the spectrum, if I had to choose between the two.

Nelie

This thread has drifted sufficiently off the topic of post treatment behavior, remember? Drinking. Now it is one of our standard statistics arguments, well peppered with the generally myopic views on alcohol consumption, held by that group of members that have had problems with its use (or been tied to someone with a problem). We have done this before, and it has, aside from the intellectual stimulation or being a sounding board for the "those who enjoy the intellectual game," accomplished nothing. Start a "useless information

Nelie - We are far afield from our discussion. Its no wonder Glenn is getting grumpy. Lets just try to agree that numbers that link alcohol use to cancer may not be conclusive. Further, trying to tie continued alcohol use to cancer recurrance is going to need a bit more study before most of us are going to be willing to change our drinking behaviors - whatever they might now be.

Glenn - my personal views about drinking are not myopic. My opinions formed over many years with a wide variety of experiences, both personal and professional. If you don't like my views, thats fine. If my humor offends you, my apologies. But don't trump my participation with anger or indignation. And please don't tackle tough personal problems armed only with computer posts from people you know little about. Discussion IS valuable, even when it drifts. Its how we learn and grow.

Alcohol use is a very tough topic. And there ARE several people here who are worth listening to on the subject. Don't let the rhetoric or the banter dim the learning. Minds are like parachutes. They work best when open. Tom

Tom,

Perhaps you are a little defensive over alcohol use, there is no anger here. I commented on the post and I'll remind you, you asked me to. I will take exception to your characterization of my knowledge of these people, I'm around here a very long time and have more personal knowledge about this sickness than most. I do find you humor pleasant, but I do get "grumpy" when a post goes off topic. Even in the above reply you continue using vague references to alcohol use. I'm sorry, your posts do not come off as well balanced on the issue, hence, in my view, myopic. Which, was directed at the thread. This is not personal, unless you feel the need to take it there. As a final thought, you have no right to characterize any of this as "a tough personal" problem. You have not seen enough here to make a statement like that.

Glenn

I'm sorry about contributing to topic drift with the statistics argument.

As for the drinking thing, the comment I've head here that personally works for me the best (but I'm in no way suggesting this should work for other people here)is that this is one of those things you can control that MAY make a difference. There's so much you can't control about what happens, beyond getting aggressive treatment to begin with, that for those of us who are control freaks, this is soemthing we can feel like we're "doing".

Nelie

Glenn - My apologies for the missed communication. I misread your post:

"I'm trying here to fight through a though physical situation myself, and nothing I have read helps me out."

- thinking that you were angry that our discussion was not helping you through a tough personal situation. My fault. And no, it isn't personal. Oh, the perils of being divided by a common language!!

On the lighter side: "My mother in law's Thanksgiving turkey was so undercooked, I think a skilled veterinarian could have revived it." Smile and the world smiles with you. Tom

Well, my Dad always told me that "fools rush in where Angels fear to tread", so here I am. For 3 yrs. before John's cancer surgery he had been on a low fat diet because of some blockage in his arteries, high blood pressure and high colestrol.
Since the cancer tx. He is eating cream of this and that,laced with extra cheese and butter, rich white sauces,tons of gravey, pounds of pasta. And he drinks a 2 or 3 cans of beer a day-hey-it's calories! He is still 25 lbs. underweight and I can count most of the bones in his body. So which part of his body is being abused now? He could go back to the low fat diet and no alcohol and just melt away, I suppose. Amy

Amy, more than one person suggested to me that deep dark beer has a ton of calories. Never having been much of a drinker, I am concerned about calories. As I've been whipping up those 1300 milkshakes posted here, I must confess that several times when my spouse and I have ventured out in public to adult venues, I've ordered Kahula and Cream---not for the buzz factor but for the calories. My days of drinking margaritas might be over, but the Kahula and Cream on the rocks is much like drinking chocolate milk.

Of course, I'm aware of the risk factors of alcohol, but I consider a couple shots a month to be minimal. Most of the time the calorie intake outweighs the risk factor. I'm usually the only one at the table ordering cheesey calorie laden appetizers as well...lol.

I hate to digress from the statistics, but sometimes it just feels good to taste again--anything. My spouse opened up a bottle of cherry and honey mead for Thanksgiving. While I couldn't drink more than a few sips, it was a blessing to just taste it briefly.

Meanwhile, cheese, butter, cream and gravy have become a staple in my daily intake. <G> Calories are calories no matter how they come.

Jen

Jen-Amen! Amy

Jen...just don't survive cancer to die of heart disease!!!! Calories are not just calories. If that were really true I'd be living on all the bad things that really taste good to me. There seems to be an inverse law of taste and eating satisfaction. The more you like the taste of something (for me it's something that has fat in it) the worse the actual contents of that thing are for you. I used to be a card carrying member of the "We don't need no stinking vegetables group" Give me a piece of greasy fat laden prime rib any day... that was the old me. I shudder to think what the walls of my arteries looked like. And the disease cofactors that went with that lifestyle

Mark,
you crack me up! I hear alcoholics, every day, in AA meetings say that they only "drank for the effect". "Normal" people drink to get a little "tipsy". I can assure you that those of us in recovery for a while are more open minded about alcohol then you think. I buy drinks for people on occasion. Even the (AA) "Big Book" states that 80% of people are "normal" drinkers and that's ok.

Glenn, I don't believe that I have a "myopic" view on alcohol at all,although I have "strongly" counseled people on occasion who obviously have drinking problems.

The bottom line here is that alcohol and tobacco use are implicated as a causitive factor for H&N cancer and also for recurrence (and many other forms of death as well).

This is directly from MSKCCC's website

"Tobacco & Alcohol Use
People who use tobacco (including smokeless tobacco) or drink alcohol excessively are at much greater risk for the disease. For example, smoking raises the risk of cancer of the larynx (voice box) or hypopharynx (the top portion of the esophagus) to 5 to 35 times the risk of nonsmokers. Heavy use of alcohol raises the risk of those cancers 2 to 5 times. Those who smoke and also drink heavily might be raising their risk to 100 times that of non-users."

So who are these imaginary people with their "myopic" viewpoint? It isn't evident who "they" are in this thread anyway.

If you want to drink, knock yourself out. MSKCCC's key buzzword is "Heavy". I doubt if an occasional cab with a steak is going to kill you (but be sure to trim the fat -that's for you Brian ;-)

Jen - there are better ways to get calories than alcohol. If you enjoy an occasional drink just admit it. Rationalizing it out for the "calories" is skating on thin ice.

Gary, I was worried because you were quiet on this. Good to see you again.

Actually, being somewhat of a control freak, I've never enjoyed a drink. As Tom pointed out, alchohol has ceremonial and ritual uses as well in our society. I've adopted the "When in Rome" philosophy when in adult company. I figure most of the calories in a cream drink probably come from the cream. Outside of a ceremonial sip of wine or mead for a toast, I never even finish the glass. Sometimes just a dab will do ya.

No worries about the vegetables, Brian. It's just that since I'm trying mightily to put weight back on, I try to up them... like squash baked with lots of butter and brown sugar or sauteeing them in olive oil.

I've been concerned with clogging my arteries and asked my doctors if I should be worried about all the cream and fat. They assured me that at this point I probably need it at this point. I even asked the nutritionist if I should be at all concerned with all the dang ice cream I've been eating and she told me that calories are calories no matter where they come from. Just for my own piece of mind though, I've been working hard in PT on weight machines trying to build back the muscle mass I lost. Don't want to just get fat.... I want my body back FIRM not flabby.

Cheers!
Jen

Jen,
I too was concerned about fat in my diet when the RO suggested that I eat Hagan Daz every day (I don't any more). Like Brian, my diet has changed predominantly to healthy things now and because that's what seems to taste the best, not because I'm worried that food will cause a recurrence (I still like my Coca Cola though).

See - "I never even finsh the glass" Spoken like a true "normie" No self respecting alcy would EVER leave a drop behind.

I never did put all of the weight back on and I am glad. I am the perfect weight now and can eat whatever I want. I just passed my 3 year post Dx mark.

Mark, most of these threads are so well covered what more can I add??

You could start a "friends" thread about blowing holes in Mr. Osama

Gary, I too am glad to see you back. As one of OCF's strongest FACT posters, you are a valued source of core information, besides your own experiences. Don't be a stranger around here.... or are you waiting for me to catch up with your record 1540 postings helping other people?

I can not over emphasize to the newbies here that a person like Gary, who has been around since almost the beginning of the board, who continues to come back to help strangers year after year, is an invaluable asset and an individual who like Mark and other long term givers, exhibit the highest form altruism, helping other people. It's a special kind of person that gives of something as valuable as their time to help people they will likely never even meet. This posting gives me the opportunity to once again thank they many of you who have continued to participate and offer your insights to the newcomers year after year.

It is with clinched teeth, I am posting this because disagreeing with Brian is like disagreeing with God. But, I have to take issue with his reply to Jen. 1st of all, we are all gonna die of something-hopefully old age-but maybe that isn't so great either. The nursing homes in this country are stuffed full of those who have outlived their family's capabilities of caring for them. 2nd-I believe the calorie consumption issue has to be addressed at each stage of your recovery. My husband's 1st IMRT was May 25th- the last July 8th. Today, Dec 7th, I can just about see every bone in his body. His mouth is a wreck and we are struggling each day to get good or Any calories into him. And that includes beer and wine. When he gets past this, say 6 months from now, then we will start counting "fat calories, etc." again. John's feeling is he would rather have a heart attack than starve to death. His stomach will only tolerate so much ice cream [shakes, etc.]In this discussion, I think we should delineate between those just trying to rebound from tx. and those who are far enough out to be more concerned about the kind of calories they are consuming. Love ya Brian. [and Mark and Gary too! Wish I could hug you guys in person}Amy

It's OK with me, and please do not make those kinds of comparisons about me. I know a bit about lots of things, an expert in anything I am not

This thread has been so much fun, I bet if I started a new one on the subject (food) we are at, it would die. So I'm going to continue the drift off of the starting topic.

Amy, you are right (and so is Brian). Right now you don't need to be concerned about any quality foodstuffs. This means fat of all kinds (very important), Protein (very important), and less important starches and sugars. Ironically the worst advice I read here is "calories are calories" and that is from a "nutritionist"! Ticks me off. The reality is fat has the highest concentration of calories of any type of food and carry important fat soluble vitimins.

{Fat is one of the three main classes of food and, at approximately 38 kJ (9 kilocalories) per gram, as compared to sugar with 17 kJ (4 kcal) per gram or ethanol with 29 kJ (7 kcal) per gram, the most concentrated form of metabolic energy available to humans. (Note that 1 kcal = 1 "Calorie", capitalised in nutrition-related contexts.)

Vitamins A, D, E, and K are fat-soluble meaning they can only be digested, absorbed, and transported in conjunction with fats. Fats are sources of essential fatty acids, an important dietary requirement.

Fats play a vital role in maintaining healthy skin and hair, insulating body organs against shock, maintaining body temperature, and promoting healthy cell function. They also serve as energy stores for the body. In food, there are two types of fats: saturated and unsaturated. Fats are broken down in the body to release glycerol and free fatty acids. The glycerol can be converted to glucose by the liver and thus used as a source of energy. The fatty acids are a good source of energy for many tissues, especially heart and skeletal muscle.}

Protein is very important after radiation treatment because the body is really busy trying to re-build what has been blasted away. The healing process will be slowed down by any shortage of these basic food components.

One of my big pet peeves is the concept of various liquid canned drinks being "all you need" that is simply BULL CRA_ Most that I have seen are not very complete. Most rely on sugar to bring up the calorie counts.

Back to fat, the really important thing here is that you mix in good (plant) fats (and some animal fats) with protein, and plenty of micro-nutrients from colored vegetables and fruits. Use the blender to make it smooth and count the calories so that you are getting 2500 or more per day. (more than that is fine until weight starts to come back.)

Prime rib in the blender is great. a little milk or cream to make it spin. Eggs are also excellent in the blender. Scramble them first then set them spinning. Many of you are new enough to not know about my Whopper with Cheese in the blender. Yes it works and yes it tasted really fine. (simply cut it into about 8 pieces and throw it in the blender with some milk.) Warm in the microwave and you have a meal to brag about.

Last, and back on track, Beer and especially heavy (usually dark) beers can run 200-300 calories per 12 ounces. These calories are carbohydrates (unfermented sugars) and partly calories derived from alcohol. Alcohol calories cannot be stored in the body. The calorie value in alcohol should not count as nutritional calories. (Many make that mistake) because the body has to get rid of it. The carbs., however, do count and are essentially the same as grains without the fiber. In other-words beer (in moderation) can help with boosting nutrition and may stimulate the appetite.

Why I know so much about beer is because I have been making my own since 1985.

So much of the literature about helping H/N cancer folks in the past has been about keeping us alive. Treatment regimes of all kinds sought little more that getting the cancer stopped. Few of the early efforts were very good at this and most of the early patients died. Treatment got better, and survivor rates started to climb. Surgeries got more refined, radiation got specific and the chemo chemists got new and better cocktails. Few early treatments paid much direct attention to quality of life - the energy was put on stopping the beast.

Survival rates are WAY up now - and rising. More of us are making it well past treatment and function and quality of life are becoming more and more important. We've got to get past the "make his final days comfortable" thinking and really restore health and function. Nutrition is terribly important in putting the body back together. So many metabolic processes rely upon the vitamins and minerals from a good diet. Healing is 'expensive' in metabolic terms and has to be supported with the raw materials from diet.

Social drinkers, go ahead and drink for comfort but know that every ounce of alcohol requires the body to divert healthy processes to detoxify. Alcohol is anesthesia to all parts of the body in any quantity. Perhaps the question is "Do you want to suspend your body's healing so that you can relax?"

There. That should get us started again.... Tom

While survival rates from some cancer have improved, that is not significantly true for oral cancer. No more people survive it today than did 40 years ago despite the improvements in radiation, chemo, and surgical techniques, this is primarily because it is 66% of the time found as a late stage disease. When it begins to be found at stage 1 and 2 more frequently, you will see the survival rates go up. Cancer this year replaced heart disease as the number one killer of Americans.

And I was never suggesting a fat free diet. Some fats, hopefully mono saturated, are necessary for normal body functions, as Mark has said. I said that diet only composed of empty calories mostly derived from sugars and fats isn't going to give you the building blocks to heal rapidly and well. You could eat 3000 calories a day of Haggen Das and still have malnutrition. If this isn't self evident to everyone, I guess we need to put up a basic nutrition page to give everyone a clear basic understanding of how the body fuels itself and what each type of nutrient brings to the party. And while I usually agree with Mark I am living proof that you can live off of basically nothing but Ensure for over a year on a PEG tube. I don't think we currently have any posters that are completely PEG based, but there are lots of them out there, and they live 100% off of can liquid diet drinks. Realizing that yes-even calories from any source are important parts of those cans, they do fill them up with sugars to make them calorie dense for the volume. But not to the exclusion of the other building blocks of nutrition. In the next 4 months we will be adding new nutrition pages to the main web site written by nutritionist/scientists from Abbot Labs. This issue needs to be stated clearly by someone with better credentials than me. This will certainly be helpful for the minority of people that actually get off these message boards and read the main body of the web site.........

Tom.
I don't know where you get your numbers from but the survival rates for H&N cancer are not significantly changed from 10 years ago. Maybe a few percentage points in our favor. There still isn't an effective chemo protocol and they are still using tried and true "slash & burn" techniques. In fact, we regularly have people here working on the "making their final days comfortable" issues. Not trying to frighten anyone but I've been here long enough to see the death toll up close and personal.

They have improved the QOL issues for many, including myelf, with IMRT and it's highly targeted cousins - but the death rate remains almost the same. Distant mets are still a major threat.

I like to thank the heavy drinkers on the site - they improve my statistical odds of survival.

I have read that anything that irritates the oral mucosa is a threat - beverages too hot or cold, mouth washes containing alcohol, etc.

Brian,

I'm looking forward to the nutrition pages since I know I have more to learn about that. I am not getting all but am getting a large percent of my nutrition off of PEG foods (the prescription kind). They do have protein in them and there are protein powders you can add to the mixture to add more protein--though I haven't done that yet because I kept thinking I'd be off the PEG soon. Truthfully, I think the nutrition from the PEG food is about as good or better than what the average Joe eats in terms of nutritional balance. If I add some fresh juices in every day (starting to do that again, now that breast raidiation is over), it's probably even better.

Nelie

You would be surprised Nellie at how good some fruit and protein powder (whey) and ice smoothies can be. They may be a good addition to your PEG. Ingrid made me some true nasty ones that had tons of vegetables in them (when I was in recovery with a regular blender), but now we have a juicer and we routinely have vegetable juices with as many as 10 different kinds of vegetables in it every week. Still not my favorite thing to drink but way less chunky and full of nutrients that I wouldn't get otherwise.

Prime Rib in the blender-now Julia Child is clinching her teeth , and Emeril is saying"don't forget to add a little good Burgandy.

Brian and Gary - My data comes from the National Cancer Institute. Invasive oral and pharyngeal cancers have shown significant decline in mortality since 1976. This has been a steady and consistant trend. Treatment survival rates for our cancers have risen during the same time period. SEER indicates that these trends are statistically significant on both tables. From an epidemiological standpoint, a national trend showing a 6% decrease in mortality is pretty important.

This year, a Korean research team has potentially tied recurrance of our disease (OSCC) to a particular marker - an enzyme that seems to guard some cancers from radio tx. There is recent and significant refinement in the use of cysplatins in support of radio therapy. These are exciting changes and promise real improvements in the usually grim numbers that surround us here.

To be sure, the battle is not won. Even though newer treatment technologies have increased the probability of surviving the cancer longer, the quality of life issues are just recently gaining real attention.

And, for the thread, I have lived exclusively on Ensure for 2.5 years now. And, aside from this, aside from this, aside from this annoying tic, I am fine!! Tom

Having just returned from a conference at the NCI related to oral cancer, I can tell you your number is not accurate as of last week's discussion. And please remember that while we all quote numbers, whether about alcohol or cancer, definitive numbers related to cancer cannot be had. The SEER numbers are only gathered from a few locations around the US, and then a best guestimate for the rest of the country is extrapolated from them. They are far from absolutes. Since the change is only a percent or two, given the guestimate that SEER numbers actually are, until there is a trend of consequence that can be tracked (there is not), everyone has agreed that the existing numbers are fairly accurate, and that is any decline is insignificant.

There is some data that suggests that HPV oropharyngeal and tonsillar cancers have slightly higher survival rates and are actually distinctly different diseases than the balance of oral cancers. This comes out of the work of Dr. Maura Gillison at Johns Hopkins, also a OCF science advisory board member. The population that they affect is completely different. White, educated, upper middle class, and equally divided by gender. This is very different from the demographics of other oral cancers. The etiology of the disease is also completely different being viral induced vs. conventional tobacco and alcohol carcinogen created. The trend of tobacco decline in the US tracked over the last 10 years, and the remaining constant of oral cancer occurrences remaining stable, would indicate that a new etiology is replacing an old, thus keeping the incidence numbers the same. If HPV 16 is really the growing cause, (and there is published evidence that it has grown as an oral cancer cause by about 3% per year for almost a decade now) and these have a slight survival advantage, then the close to 2% drop we have seen can be accounted for. That is the current thinking of the CDC Oral cancer Work Group which I have a seat on, and the people at the NIH/NIDCR whose senior scientist is an OCF science advisory board member, and that is also an unproven belief hypothesis at NCI.

Regardless of the lack of major improvements in treatment (what you are quoting are not considered major improvements as some institutions have for years done concurrent chemo and radiation, and the published data is just now coming out showing a slight survival advantage, but not in end results), I stand by the fact that until we are finding the disease at early stages when it is more susceptible to the modalities of treatment we have, the death rate will not decline significantly.

Brian,
Well I'll sleep better tonight knowing that I am one of those upper middle class, educated, white, non-smoking and drinking tomsil cancer survivors. Dr. Gillison will be my new patron saint! Does she have any data on recurrence at the original tumor bed or distant mets from tonsil cancer?

All kidding aside - it all makes sense. Very interesting.

Too early to publish data. You have to remember that it is only in the last year that they have actually started calling this a unique cancer, though it will always be grouped with other oral cancers. I can assure you that since I talk to her almost weekly, that pre-publication information will get to you all first.... What I tried to say to Tom in the last message was that while we have better outcomes from treatment, we are not seeing end results improvement. If this indeed shows survival advantage long term, the question will then become why? Is it a reluctance for this cancer to develop mets elsewhere? That I can through personal experience tell you isn't true. But it is generally believed as we speak of the 5-year number that the odds of recurrence in the same location drop dramatically. This is both from viral and tobacco induced cancers. It is more important as you get further away from the 2-year mark to start monitoring the rest of the aero digestive tract. I am now getting an upper endoscopy every two years. This started with GERD issues, but has been recommended to me as something that would be prudent. So at over 5 years now, I am more concerned with second primaries than I am for a recurrence in the original local environment.

Tom- I just reread my last post and I don't want to come across as some know it all, because I have stated many times I am still on a learning curve myself. I am just further down the path than some others here in a few respects.

I was contacted by the American Academy of Oral Medicine, which is a very small highly trained group of specialists (300) and I will be speaking at their annual conference in Puerto Rico next year as the keynote speaker. At that meeting I am told I will be inducted as a member of the Academy... the first non-doctor to have such an honor. I joked with the person that called me that they are so small and elite a group that they just must need more dues paying members. But he assured me it was because of my contributions to furthering the cause of early detection and awareness of a disease which while very survivable if caught as an early stage disease, has not significantly improved in end results (death rate) over half a century.

Well, I had a "smart a**" remark to make to Gary until I read Brian's post and that put me back in my place. Congratulations, Brian, and thank you for being in the right place at the right time. Amy

Brian - Congratulations on your upcoming induction into such an exclusive group! Well done and well deserved I am sure.

Clearly you have traveled a particular path of learning much further than I. And, I have great respect for your expertise and your willingness to share it with new folks - like me. All that sincerely said, let me take issue with you.

I do not share your easy dismissal of SEER data. "Guesstimating" from samples is what data mining and research are all about. Prediction is the whole purpose of research. SEER samples are, as you say, from limited locations, but they do come from a dandy variety of important locations across the country. They do not present their data as randomly gathered, or fully representative of national trends, but they have done a good job of correcting/adjusting their samples and analyzing their data carefully. The sample sizes are large enough to be trend significant and they do show improvements in survivability. These improvements may not matter to you, but they matter to those persons counted, and they surely offer hope in this 'hope-limited' club we have all joined.

Your apparent cynicism about research progress is well founded from your sources I am sure. You report that you have a seat on the Oral Cancer Work Group. Who are these people and how broad is the reach of their data? How do they keep up with research trends - or do they speak only from their own research?

And don't sweep away the recent research findings about cisplatins + radio. Though I cannot relocate the abstract (yet), a group of Korean researchers has isolated the protein mechanism of squamous cell cancers - causing some to become radio resistant, and thereby likely leading to disease metastisis and recurrence. This study may raise some important treatment issues and lead us to protein analysis of tumors before the tx plan is drawn up. This is potentially no small step forward.

Perhaps we could share your views if we knew where they came from. Perhaps your technical assertions would be more useful to us if we could see them in a context beyond the views of one committee or one treatment center. As you have said repeatedly, its very hard to see this disease on a broad scale. How then do you do so?

And no one here is challenging the need to find this disease earlier. Your obvious passion about this is, I am sure, shared by many among us. Your expertise and your passion are obvious cornerstones in this forum. Your assertions and technical language seem to sweep challenges aside. Please don't think me unloyal or ungrateful. Tom

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

I always find the discussion about numbers/stats and this horrible disease challenging to read about, here and in the clinical journals.

Everyone is different but for me I find I have the tendency to begin reading clinical journal articles on HNC- get depressed by the current ones that start with some version of "the long term prognosis for this group is poor" and usually keep reading until I find one or more that start with something like "this trial demonstrates significant improval in survival rates due to ( fill in the blank)".

That said, I'm very grateful to those hard-headed scientists and highly knowledgable lay people who continue to use every means possible -research, trials, statistical analysis,cross-disciplinary discussion/cooperation - to try and understand what the heck is going on and how HNC survival rates can be improved, including promoting ways of earlier detection.

Thanks to all of you on this site. You are truly wonderful.

Mary

I am quite willing to be the positive section of any trial... I WILL NOT GIVE UP MY RED WINE.. Cancer has taken enough of my quality of life..
i.e. chocolate and sweet things.
BEFORE ANYONE SAYS I'M BEING FLIPPANT..
I'm 57 years old drive a car, cross busy roads, climb stairs, use sharp kitchen knives, take dubious prescribed meds.. I also have Lupus and need daily steroids..
So I read the papers, study the statistic's, if I'm wrong I will only blame me.
My Dad was 85 when he died he ate only junk food, hated anything GREEN, smoked from being 12 years old. His lifestyle didn't kill him being in a hospital bed with ulcerated legs killed him..
No before anyone comes back with angry comments to me REMEMBER life is a lottery, and we are only the players in the game
I await your comments with interest...
Sunshine... love and hugs
Helen

Brian,

Thank goodness for this: "That is why there are advocates like me on the group to piss and moan and push for what the oral cancer community needs." Keep pissing and moaning!

In part because of my personality and in part because of my background, I find research on this stuff, including the limitations of that research, interesting. I'm just intrigued by science, basically, and by medical innovations. My grandfather was a heart surgeon at Columbia Med. school and he started his career back in the dark ages of medicine and kept up with innovations in his field into his late 90s. Knowing about the improvements he saw in treatments over seven decades(including ones he pioneered), I have quite an optimistic view of what medical research can achieve over time. Learning about new research on treating and preventing oral cancer feels like part of what makes the intrusion of this disease into my life bearable. It takes me out of myself and my own personal misery. But I know I'm a minority in this.

What I love about this forum, though, is the personal support I have found for every little hard piece of this battle, and the times when I have been able to offer some support to someone else. That also takes me out of myself and I agree that that is what the discussions here should mainly be about.

Nelie

Nelie - I realize that what you and what Tom say about continuing to learn and understanding the process is important to some. I also understand that none of us can know all there is to know about any of these subjects, and there is new information coming everyday, every hour even. Some, like you and Tom, revel in the new data, others are confused by it. You are better trained to interpret it knowing about bias and the actual nature of scientific publishing, but for others it is a maze of information with no road map. Look at the number of publications on whether or not coffee is good or bad for you.... hundreds and they still can't tell us for sure. That doesn't mean that the media do not pick up the stories and run with them every time something new comes out. In the end who has been served by it? I still don't know if I should be drinking coffee or not!

For some a statistic means hope, for others it means depression and loss of hope. We are all out of control once this hits us. In my own case knowledge and the continued pursuit of it gave me some sense of control as I felt chance favors the prepared mind. But I quickly learned that the small breakthroughs were not going to make any difference in my own case, that the protocols that were available (even at the best institutions in the world) change slowly and carefully, and my running to my doctors with the latest article I had found didn't change what they were going to do to me. I would love to understand this the way some of the researchers that I deal with do, but even they know only about their small corner of the cancer world and paradigm.

Neither Tom nor you are wrong in being curious, seeking answers etc. And certainly you have elucidated us all on the board again about the shortcoming of statistics and more. We have 20 - 40 thousand people on the web site at any given moment during our peak hours. In all likelihood they are not here because of any academic interest. There is a concern that brought them to the site

And when I asked my H&N surgeon why did I survive (expecting dome lengthly analysis on multiple variables and statistics) - he summed it up in one word "LUCK".

Helen,
you have brought red wine times on the forum. If you taking any hits it might br because some here have problems with alcohol. If you want to drink that's fine but it probably doesn't belong on the forum as it isn't information that is going to HELP anybody. I understand your feelings - I won't give up Coca Cola - but I don't consistently promote it on the site.

Since this thread was originally about alcohol and cancer, and it has traveled so far afield from there to become a rambling dialog of unrelated things, I am going to close it. It has been a day since I put up the gargantuan post about statistics etc. again, and it appears that people are willing to let the point die a nice, silent death. So I am going to close this thread. Anyone wanting to further discuss the alcohol issue, please start a new thread.

Jen-Amen! Amy

Jen...just don't survive cancer to die of heart disease!!!! Calories are not just calories. If that were really true I'd be living on all the bad things that really taste good to me. There seems to be an inverse law of taste and eating satisfaction. The more you like the taste of something (for me it's something that has fat in it) the worse the actual contents of that thing are for you. I used to be a card carrying member of the "We don't need no stinking vegetables group" Give me a piece of greasy fat laden prime rib any day... that was the old me. I shudder to think what the walls of my arteries looked like. And the disease cofactors that went with that lifestyle

Mark,
you crack me up! I hear alcoholics, every day, in AA meetings say that they only "drank for the effect". "Normal" people drink to get a little "tipsy". I can assure you that those of us in recovery for a while are more open minded about alcohol then you think. I buy drinks for people on occasion. Even the (AA) "Big Book" states that 80% of people are "normal" drinkers and that's ok.

Glenn, I don't believe that I have a "myopic" view on alcohol at all,although I have "strongly" counseled people on occasion who obviously have drinking problems.

The bottom line here is that alcohol and tobacco use are implicated as a causitive factor for H&N cancer and also for recurrence (and many other forms of death as well).

This is directly from MSKCCC's website

"Tobacco & Alcohol Use
People who use tobacco (including smokeless tobacco) or drink alcohol excessively are at much greater risk for the disease. For example, smoking raises the risk of cancer of the larynx (voice box) or hypopharynx (the top portion of the esophagus) to 5 to 35 times the risk of nonsmokers. Heavy use of alcohol raises the risk of those cancers 2 to 5 times. Those who smoke and also drink heavily might be raising their risk to 100 times that of non-users."

So who are these imaginary people with their "myopic" viewpoint? It isn't evident who "they" are in this thread anyway.

If you want to drink, knock yourself out. MSKCCC's key buzzword is "Heavy". I doubt if an occasional cab with a steak is going to kill you (but be sure to trim the fat -that's for you Brian ;-)

Jen - there are better ways to get calories than alcohol. If you enjoy an occasional drink just admit it. Rationalizing it out for the "calories" is skating on thin ice.

Gary, I was worried because you were quiet on this. Good to see you again.

Actually, being somewhat of a control freak, I've never enjoyed a drink. As Tom pointed out, alchohol has ceremonial and ritual uses as well in our society. I've adopted the "When in Rome" philosophy when in adult company. I figure most of the calories in a cream drink probably come from the cream. Outside of a ceremonial sip of wine or mead for a toast, I never even finish the glass. Sometimes just a dab will do ya.

No worries about the vegetables, Brian. It's just that since I'm trying mightily to put weight back on, I try to up them... like squash baked with lots of butter and brown sugar or sauteeing them in olive oil.

I've been concerned with clogging my arteries and asked my doctors if I should be worried about all the cream and fat. They assured me that at this point I probably need it at this point. I even asked the nutritionist if I should be at all concerned with all the dang ice cream I've been eating and she told me that calories are calories no matter where they come from. Just for my own piece of mind though, I've been working hard in PT on weight machines trying to build back the muscle mass I lost. Don't want to just get fat.... I want my body back FIRM not flabby.

Cheers!
Jen

Jen,
I too was concerned about fat in my diet when the RO suggested that I eat Hagan Daz every day (I don't any more). Like Brian, my diet has changed predominantly to healthy things now and because that's what seems to taste the best, not because I'm worried that food will cause a recurrence (I still like my Coca Cola though).

See - "I never even finsh the glass" Spoken like a true "normie" No self respecting alcy would EVER leave a drop behind.

I never did put all of the weight back on and I am glad. I am the perfect weight now and can eat whatever I want. I just passed my 3 year post Dx mark.

Mark, most of these threads are so well covered what more can I add??

You could start a "friends" thread about blowing holes in Mr. Osama

Gary, I too am glad to see you back. As one of OCF's strongest FACT posters, you are a valued source of core information, besides your own experiences. Don't be a stranger around here.... or are you waiting for me to catch up with your record 1540 postings helping other people?

I can not over emphasize to the newbies here that a person like Gary, who has been around since almost the beginning of the board, who continues to come back to help strangers year after year, is an invaluable asset and an individual who like Mark and other long term givers, exhibit the highest form altruism, helping other people. It's a special kind of person that gives of something as valuable as their time to help people they will likely never even meet. This posting gives me the opportunity to once again thank they many of you who have continued to participate and offer your insights to the newcomers year after year.

It is with clinched teeth, I am posting this because disagreeing with Brian is like disagreeing with God. But, I have to take issue with his reply to Jen. 1st of all, we are all gonna die of something-hopefully old age-but maybe that isn't so great either. The nursing homes in this country are stuffed full of those who have outlived their family's capabilities of caring for them. 2nd-I believe the calorie consumption issue has to be addressed at each stage of your recovery. My husband's 1st IMRT was May 25th- the last July 8th. Today, Dec 7th, I can just about see every bone in his body. His mouth is a wreck and we are struggling each day to get good or Any calories into him. And that includes beer and wine. When he gets past this, say 6 months from now, then we will start counting "fat calories, etc." again. John's feeling is he would rather have a heart attack than starve to death. His stomach will only tolerate so much ice cream [shakes, etc.]In this discussion, I think we should delineate between those just trying to rebound from tx. and those who are far enough out to be more concerned about the kind of calories they are consuming. Love ya Brian. [and Mark and Gary too! Wish I could hug you guys in person}Amy

It's OK with me, and please do not make those kinds of comparisons about me. I know a bit about lots of things, an expert in anything I am not

This thread has been so much fun, I bet if I started a new one on the subject (food) we are at, it would die. So I'm going to continue the drift off of the starting topic.

Amy, you are right (and so is Brian). Right now you don't need to be concerned about any quality foodstuffs. This means fat of all kinds (very important), Protein (very important), and less important starches and sugars. Ironically the worst advice I read here is "calories are calories" and that is from a "nutritionist"! Ticks me off. The reality is fat has the highest concentration of calories of any type of food and carry important fat soluble vitimins.

{Fat is one of the three main classes of food and, at approximately 38 kJ (9 kilocalories) per gram, as compared to sugar with 17 kJ (4 kcal) per gram or ethanol with 29 kJ (7 kcal) per gram, the most concentrated form of metabolic energy available to humans. (Note that 1 kcal = 1 "Calorie", capitalised in nutrition-related contexts.)

Vitamins A, D, E, and K are fat-soluble meaning they can only be digested, absorbed, and transported in conjunction with fats. Fats are sources of essential fatty acids, an important dietary requirement.

Fats play a vital role in maintaining healthy skin and hair, insulating body organs against shock, maintaining body temperature, and promoting healthy cell function. They also serve as energy stores for the body. In food, there are two types of fats: saturated and unsaturated. Fats are broken down in the body to release glycerol and free fatty acids. The glycerol can be converted to glucose by the liver and thus used as a source of energy. The fatty acids are a good source of energy for many tissues, especially heart and skeletal muscle.}

Protein is very important after radiation treatment because the body is really busy trying to re-build what has been blasted away. The healing process will be slowed down by any shortage of these basic food components.

One of my big pet peeves is the concept of various liquid canned drinks being "all you need" that is simply BULL CRA_ Most that I have seen are not very complete. Most rely on sugar to bring up the calorie counts.

Back to fat, the really important thing here is that you mix in good (plant) fats (and some animal fats) with protein, and plenty of micro-nutrients from colored vegetables and fruits. Use the blender to make it smooth and count the calories so that you are getting 2500 or more per day. (more than that is fine until weight starts to come back.)

Prime rib in the blender is great. a little milk or cream to make it spin. Eggs are also excellent in the blender. Scramble them first then set them spinning. Many of you are new enough to not know about my Whopper with Cheese in the blender. Yes it works and yes it tasted really fine. (simply cut it into about 8 pieces and throw it in the blender with some milk.) Warm in the microwave and you have a meal to brag about.

Last, and back on track, Beer and especially heavy (usually dark) beers can run 200-300 calories per 12 ounces. These calories are carbohydrates (unfermented sugars) and partly calories derived from alcohol. Alcohol calories cannot be stored in the body. The calorie value in alcohol should not count as nutritional calories. (Many make that mistake) because the body has to get rid of it. The carbs., however, do count and are essentially the same as grains without the fiber. In other-words beer (in moderation) can help with boosting nutrition and may stimulate the appetite.

Why I know so much about beer is because I have been making my own since 1985.

So much of the literature about helping H/N cancer folks in the past has been about keeping us alive. Treatment regimes of all kinds sought little more that getting the cancer stopped. Few of the early efforts were very good at this and most of the early patients died. Treatment got better, and survivor rates started to climb. Surgeries got more refined, radiation got specific and the chemo chemists got new and better cocktails. Few early treatments paid much direct attention to quality of life - the energy was put on stopping the beast.

Survival rates are WAY up now - and rising. More of us are making it well past treatment and function and quality of life are becoming more and more important. We've got to get past the "make his final days comfortable" thinking and really restore health and function. Nutrition is terribly important in putting the body back together. So many metabolic processes rely upon the vitamins and minerals from a good diet. Healing is 'expensive' in metabolic terms and has to be supported with the raw materials from diet.

Social drinkers, go ahead and drink for comfort but know that every ounce of alcohol requires the body to divert healthy processes to detoxify. Alcohol is anesthesia to all parts of the body in any quantity. Perhaps the question is "Do you want to suspend your body's healing so that you can relax?"

There. That should get us started again.... Tom

While survival rates from some cancer have improved, that is not significantly true for oral cancer. No more people survive it today than did 40 years ago despite the improvements in radiation, chemo, and surgical techniques, this is primarily because it is 66% of the time found as a late stage disease. When it begins to be found at stage 1 and 2 more frequently, you will see the survival rates go up. Cancer this year replaced heart disease as the number one killer of Americans.

And I was never suggesting a fat free diet. Some fats, hopefully mono saturated, are necessary for normal body functions, as Mark has said. I said that diet only composed of empty calories mostly derived from sugars and fats isn't going to give you the building blocks to heal rapidly and well. You could eat 3000 calories a day of Haggen Das and still have malnutrition. If this isn't self evident to everyone, I guess we need to put up a basic nutrition page to give everyone a clear basic understanding of how the body fuels itself and what each type of nutrient brings to the party. And while I usually agree with Mark I am living proof that you can live off of basically nothing but Ensure for over a year on a PEG tube. I don't think we currently have any posters that are completely PEG based, but there are lots of them out there, and they live 100% off of can liquid diet drinks. Realizing that yes-even calories from any source are important parts of those cans, they do fill them up with sugars to make them calorie dense for the volume. But not to the exclusion of the other building blocks of nutrition. In the next 4 months we will be adding new nutrition pages to the main web site written by nutritionist/scientists from Abbot Labs. This issue needs to be stated clearly by someone with better credentials than me. This will certainly be helpful for the minority of people that actually get off these message boards and read the main body of the web site.........

Tom.
I don't know where you get your numbers from but the survival rates for H&N cancer are not significantly changed from 10 years ago. Maybe a few percentage points in our favor. There still isn't an effective chemo protocol and they are still using tried and true "slash & burn" techniques. In fact, we regularly have people here working on the "making their final days comfortable" issues. Not trying to frighten anyone but I've been here long enough to see the death toll up close and personal.

They have improved the QOL issues for many, including myelf, with IMRT and it's highly targeted cousins - but the death rate remains almost the same. Distant mets are still a major threat.

I like to thank the heavy drinkers on the site - they improve my statistical odds of survival.

I have read that anything that irritates the oral mucosa is a threat - beverages too hot or cold, mouth washes containing alcohol, etc.

Brian,

I'm looking forward to the nutrition pages since I know I have more to learn about that. I am not getting all but am getting a large percent of my nutrition off of PEG foods (the prescription kind). They do have protein in them and there are protein powders you can add to the mixture to add more protein--though I haven't done that yet because I kept thinking I'd be off the PEG soon. Truthfully, I think the nutrition from the PEG food is about as good or better than what the average Joe eats in terms of nutritional balance. If I add some fresh juices in every day (starting to do that again, now that breast raidiation is over), it's probably even better.

Nelie

You would be surprised Nellie at how good some fruit and protein powder (whey) and ice smoothies can be. They may be a good addition to your PEG. Ingrid made me some true nasty ones that had tons of vegetables in them (when I was in recovery with a regular blender), but now we have a juicer and we routinely have vegetable juices with as many as 10 different kinds of vegetables in it every week. Still not my favorite thing to drink but way less chunky and full of nutrients that I wouldn't get otherwise.

Prime Rib in the blender-now Julia Child is clinching her teeth , and Emeril is saying"don't forget to add a little good Burgandy.

Brian and Gary - My data comes from the National Cancer Institute. Invasive oral and pharyngeal cancers have shown significant decline in mortality since 1976. This has been a steady and consistant trend. Treatment survival rates for our cancers have risen during the same time period. SEER indicates that these trends are statistically significant on both tables. From an epidemiological standpoint, a national trend showing a 6% decrease in mortality is pretty important.

This year, a Korean research team has potentially tied recurrance of our disease (OSCC) to a particular marker - an enzyme that seems to guard some cancers from radio tx. There is recent and significant refinement in the use of cysplatins in support of radio therapy. These are exciting changes and promise real improvements in the usually grim numbers that surround us here.

To be sure, the battle is not won. Even though newer treatment technologies have increased the probability of surviving the cancer longer, the quality of life issues are just recently gaining real attention.

And, for the thread, I have lived exclusively on Ensure for 2.5 years now. And, aside from this, aside from this, aside from this annoying tic, I am fine!! Tom

Having just returned from a conference at the NCI related to oral cancer, I can tell you your number is not accurate as of last week's discussion. And please remember that while we all quote numbers, whether about alcohol or cancer, definitive numbers related to cancer cannot be had. The SEER numbers are only gathered from a few locations around the US, and then a best guestimate for the rest of the country is extrapolated from them. They are far from absolutes. Since the change is only a percent or two, given the guestimate that SEER numbers actually are, until there is a trend of consequence that can be tracked (there is not), everyone has agreed that the existing numbers are fairly accurate, and that is any decline is insignificant.

There is some data that suggests that HPV oropharyngeal and tonsillar cancers have slightly higher survival rates and are actually distinctly different diseases than the balance of oral cancers. This comes out of the work of Dr. Maura Gillison at Johns Hopkins, also a OCF science advisory board member. The population that they affect is completely different. White, educated, upper middle class, and equally divided by gender. This is very different from the demographics of other oral cancers. The etiology of the disease is also completely different being viral induced vs. conventional tobacco and alcohol carcinogen created. The trend of tobacco decline in the US tracked over the last 10 years, and the remaining constant of oral cancer occurrences remaining stable, would indicate that a new etiology is replacing an old, thus keeping the incidence numbers the same. If HPV 16 is really the growing cause, (and there is published evidence that it has grown as an oral cancer cause by about 3% per year for almost a decade now) and these have a slight survival advantage, then the close to 2% drop we have seen can be accounted for. That is the current thinking of the CDC Oral cancer Work Group which I have a seat on, and the people at the NIH/NIDCR whose senior scientist is an OCF science advisory board member, and that is also an unproven belief hypothesis at NCI.

Regardless of the lack of major improvements in treatment (what you are quoting are not considered major improvements as some institutions have for years done concurrent chemo and radiation, and the published data is just now coming out showing a slight survival advantage, but not in end results), I stand by the fact that until we are finding the disease at early stages when it is more susceptible to the modalities of treatment we have, the death rate will not decline significantly.

Brian,
Well I'll sleep better tonight knowing that I am one of those upper middle class, educated, white, non-smoking and drinking tomsil cancer survivors. Dr. Gillison will be my new patron saint! Does she have any data on recurrence at the original tumor bed or distant mets from tonsil cancer?

All kidding aside - it all makes sense. Very interesting.

Too early to publish data. You have to remember that it is only in the last year that they have actually started calling this a unique cancer, though it will always be grouped with other oral cancers. I can assure you that since I talk to her almost weekly, that pre-publication information will get to you all first.... What I tried to say to Tom in the last message was that while we have better outcomes from treatment, we are not seeing end results improvement. If this indeed shows survival advantage long term, the question will then become why? Is it a reluctance for this cancer to develop mets elsewhere? That I can through personal experience tell you isn't true. But it is generally believed as we speak of the 5-year number that the odds of recurrence in the same location drop dramatically. This is both from viral and tobacco induced cancers. It is more important as you get further away from the 2-year mark to start monitoring the rest of the aero digestive tract. I am now getting an upper endoscopy every two years. This started with GERD issues, but has been recommended to me as something that would be prudent. So at over 5 years now, I am more concerned with second primaries than I am for a recurrence in the original local environment.

Tom- I just reread my last post and I don't want to come across as some know it all, because I have stated many times I am still on a learning curve myself. I am just further down the path than some others here in a few respects.

I was contacted by the American Academy of Oral Medicine, which is a very small highly trained group of specialists (300) and I will be speaking at their annual conference in Puerto Rico next year as the keynote speaker. At that meeting I am told I will be inducted as a member of the Academy... the first non-doctor to have such an honor. I joked with the person that called me that they are so small and elite a group that they just must need more dues paying members. But he assured me it was because of my contributions to furthering the cause of early detection and awareness of a disease which while very survivable if caught as an early stage disease, has not significantly improved in end results (death rate) over half a century.

Well, I had a "smart a**" remark to make to Gary until I read Brian's post and that put me back in my place. Congratulations, Brian, and thank you for being in the right place at the right time. Amy