I've tried, over time, to get past the dismal statistical prognosis for stage IV tonsil cancer. Almost two years out from my husband's treatment, I thought I had put the numbers behind me. But he is just now starting to look at some of the web sites where you can find the numbers. I think that he had too much to deal with before. Anyway, he is happy to have made it to almost the two year mark (because I have told him that is a good place to be) but also seeing the stats quoted for 5-year survival rates... 20 - 40% survival for stage IV. I'm having trouble giving him a positive spin. Don't quite know what I am asking for. Guess I'm just looking for some wisdom from some seasoned soldiers in this battle.

Best,
Anita

Hi Anita,

My husband had the same stage tonsil cancer as your husband, and it has been 3yrs. 7mos and just the other day he was talking to someone about the Doctor being so point blank about it being 10 percent if he had no surgery and only went the Chemo/Rad Route and 40 percent if he did the whole nine yards, which is what he did. I keep telling him statistics can't always be correct because everyone is different. I said I also think the Doc tried to scare him a bit too, he said it was aggressive and needed to be dealt with.
It bothers him that when he sees his ENT/Surgeon the Doc seems very surprised that he is okay. (Knock on some wood) sorry he is due for an appt and CT scan soon.
Dan usually doesn't talk about the cancer,but he says everytime he looks in the mirror you can't forget about it because with the type they had it is obvious, at least it is with my husband Dan he had a radical neck disection and he gets annoyed with people doing double takes, or asking about his "accident"...I just keep telling him at least he is around to be stared at!!!
I have told him that so many on this site have never went into remission and have had one battle after another....Time to count our blessings.

Take care
Sherrie

Anita, this is right up my alley (and I am 3+ years from diagnosis). I have copied a post I made in 2003, but it is still valid. Ready?
---------------

I was a math major in a long past life and the area of statistics was of particular interest. I can make them say anything anyone wants.

So. Each of us is a particular set of circumstances that is unlike those of any other person. We are only our own statistic! If we seek appropriate treatment in an appropriate time frame, if we follow all recommendations, if we have a positive attitude and faith that we will survive, odds are good that we will.

The oft quoted statistics include those non-compliant patients who continue to smoke and chew and drink, the people who went in with other disease like heart or cirrosis or diabetes, or just advanced age. Also those who have chosen alternative and unproven treatments outside recommended mainstream procedures. All of this has absolutely nothing to do with most of us.

The odds are not good, but I might be run over by a bus tomorrow. The key here, and this is VERY important, is that nobody can see into the future. I repeat: nobody can see into the future. What this means is that to spend time and energy worrying about what you cannot know is to degrade the quality of life. We need to celebrate the fact that we have, for at least a while and perhaps for a very long time, defeated a terrible enemy. Life is for NOW. Life is for LIVING. Life is NOT for obsessing over those things we cannot change.
------------

I am now down off of my soapbox but you can see this is a hot button issue for me. I don't want to see anyone making themselves sick over numbers that mean nothing.

I will add to this the provision that we all go to our follow-up appointments, because if there is a recurrence, the earlier it is found, the better chance there is to again defeat it.

Joanna, former stage IV, who hopes this helps

Anita, My wisdom says;"when you get up in the morning you are on the good side of the statistics". This is not to be funny, but there is NO way for an individual to know. The statistics are averages of large numbers of people. They do not work except to prepare treatment options and data for research. We have lost people here that were stage one and we have many that are still around after stage four.

Stay in the moment you know you have.

I hate the statistic thing. I remember when my husband was diagnosed, the first question he asked was what are my chances. The ENT told him that he had about 80% survival.

My first thought was DAMN that is great! Something really positive to hold onto. But that feeling dwindled as I was exposed to his reaction. He basically is convinced that there is the 20% and someone has to be part of that and it will be him.

It didn't help that he was diagnosed clinically depressed shortly before his cancer was found. He has harped on the statistics and he makes me wish everyday that they didn't exist.

He then asked the doc what the over all life expectancy was. The doc spit out some numbers about how many years he can expect to be taken off of his life and that his normal life expectancy was 78 and etc.etc. By the time he finished it was easy to calculate that he was essentially giving him less than 15 years after he beats the cancer. I cringed and bit my tongue as he was saying these things to this person who did not need to hear it.

I hold onto the hope that he will be fine and that he will beat this thing. I just wish he could let him self feel the same.

Cindy

I was told all the same statistics. I sure had some pretty low moments last year, but I've always believed I could beat the odds in anything. If the cancer comes back then I will fight it again! Call it a boldness, assertiveness, aggresiveness, I don't know what! It's part of who I am. It makes my wife nuts sometimes, but oh well! It served me well last year & still does today. Mind over matter. I believe I will live to be an old man & see many grandchildren! HaHa!

Anita,
My husband was stage IV tonsil cancer, had only radiation, and he will be five years out this May. It is very scary when you read all the statistics, but I hope it helps to know real people who are doing great 3, 4, and even 5 years down the road with the same stage.
Blessings,
Julie

Anita,

I was lucky and didn't have as late stage of cancer. After I was diagnosed and before I started getting in to see the doctors, I was a mad woman researching on the internet. What I found absolutely terrified me. A good friend thought he was being incredibly helpful and bought me some research book in adobe acrobate format.

Thankfully a co-workers wife worked at Dana Farber and spoke with me during that limbo diagnosis to doctor period. She told me to put all those things away and never look at them again.

It helped to understand that those are 5 year statistics. Not today's statistics. Even in 5 short years, they've had come so far with medical technology and treatment. Forget those statistics, your husband is his own, so help him go out and prove it!!!

Sabrina

Anita, as noted above, statistics can say anything you want to say. So ignore them. Statistics don't apply to individuals. Have faith that the medical team will do everything they can to defeat the disease and your husband should do everything he can to help them defeat the disease. If you have done all you can, then there is no point in worrying about the outcome. What will be will be and there is nothing else you can do if you have done all you can. Rest easy. All us stage IV's have to stick together.

Hi Anita,

I am also a tonsil cancer (stage 4) survivor of almost two years. When I read about the survivol rates for stage 4 cancer I thought I won't be around long.
I was lucky enough to get some sound advice from this forum.
The numbers mean nothing to you or I. Your husband is only one person and thats how he should look at it. He will either survive or he won't. He can do everything in his power to fight this bastard of a diaease.
When I had a reoccurrance last June I started Chemo and so far it's doing it's intended job.
Scans in late dec/04 showed the metastic cancer that was in my lungs in June was completely GONE!!! The cancer in the original tonsil area was termed stable. No growth there in six months.

We are all different and react differentely to the same treatment. My advice to you and your husband is to enjoy each day to the fullest, don't let cancer or it's statistic's dominate your thoughts. Like Mark said some lose the battle at stage one and some win the battle with stage four.

All my best, Danny Boy

Hello Anita; I would have thought that the statistics were drowned by now with all the (useless) tears I have shed over them. I think that they can be more insidious than cancer itself. Twelve years ago I had metastatic melanoma, bad bad stuff, surgery and chemo,and here I am battling another nasty kind of cancer at stage IV. I wonder what the statistics would say about that?
I can't see the future, but I sure as heck refuse to let statistics rob me of my wonderful present.
With love and encouragement to you,
Fran

Hi Anita,
Screw the statistics. Just never, ever give up until you are absolutely positively that there is no other option. We don't all make it, but give have him give it the best fight you can. We are all pulling for him. Get him on the forum and maybe he will ask his own questions and express his fears.
Take care,
Eileen

Anita, I am also a member of the tonsil cancer family and my situation at T2N3M0 is more severe than your husband. I just received chemo and radiation treatment.I am still alive after 3 years going back to my full time job as a teacher of the high school. I was grateful to my team of doctors who never talked about my survival rate. They only told me that they would fight with me and pushed me to the survival group. When I was diagnosed and treated, I was so ignorant and did not have the energy to surf information on the computer. My husband and 2 sons were so occupied with their own work that they could only support me spiritually. That may be a reason why we have more wives or daughters as caregivers asking questions on this forum. I always believe that knowledge is power but at the point of cancer statistics, I would say ignorance can bring some peace to our mind. If I had discovered this forum before treatment, I could have been scared by the sad experiences of some unfortunate members here.Of course a positive side is I could get myself better equipped with necessary information and support, which might have helped me escape from the depression episode which was 10 times more difficult to cope with than the cancer itself. So I have learned to be selective on the information that has positive impact on my health. Statistics is the one I will skip.

Karen.

Just tonight had a chance to look at all the wonderful replies to my post. Want to thank each of you. Puts a whole new spin on the numbers game - but this one is"strength in numbers" - you guys are great.

Anita

I never thought that you're a statistic until you're dead anyway - then who cares. Of course if he's really old, has other health issues, still drinking, smoking, or chewing tobacco then thank him for improving MY odds.

Oh and did I add that the chance of recurrence is 80% in the 1st year and 15% in the second, then drops to 5% after that so statistically he is past the worst part.
Future tripping can only serve to drive you both nuts. Take it one day at a time. Only God owns the future. Tell him to have some gratitude for what he has TODAY - that he is cancer free! Maybe he needs some therapy.

I'm in the same place, at 2 years, and the same stage III/IV and except for when I'm visiting here or someone asks me about it. I don't think about it much anymore. I have moved on and life is fuller and richer than ever before, every day is a gift.

Gary, another example of how different men and women react to their experience. I am more senior than you in terms of cancer encounter, not of age but I am still thinking of the disease every day. Luckily, I am just thinking but not worrying. When I wake up, I will tell myself how fantastic it is that I am still breathing,being able to enjoy my life in the way I like. My husband has long forgotten that I am a cancer survivor because sometimes he asked me to try some delicious spicy food not realising that the slightest spice would send me to the ceiling. I stared at him and then he remembered! About the recurrence rate, all along my oncologist told me that my chance of recurrence was very high, high, quite high. It was only in my last appointment in January that he said my chance has become very low now!He made my day.Yes, every day is a gift.

Karen

Karen, I guarantee you that I am female, but I am in the same situation as Gary in that I just don't think about being a survivor. I have scars that I see every day, but it just doesn't compute. They are a part of me now and I am very busy in my life. Going for a checkup is like visiting friends, and I actually look forward to seeing those people who worked so hard to save my life. To illustrate further, it is like I had measles, mumps, cancer, chicken pox, and I had my wisdom teeth pulled. Just not a part of my daily life any more than the other items listed. When I was fighting it, I thought about the cancer every day, all day. That is done now, and I think of many other things that are in the present. I wish I could bottle this attitude and give it to everyone who cannot stop worrying.

Your last appointment in January should make your year! Congratulations!! That is great news.

It was pointed out to me that I should clarify one thing - if you are going to HAVE a recurrence, then there is an 80% chance of it in the first year and 15% the second year.

Karen I have to admit that I don't have the majority of the post Tx issues that most here comment about. Spicey foods don't bother me, eat anything, I have most of my salivary function back, no swallowing problems, etc. I actually feel better than I did pre cancer.

Ditto here on eating anything (and EVERYTHING ). I have actually put on about 40 lbs since July and even ate a foot long Subway the other day with jalapenos, oil & vinegar, toasted and did not even drink a drop of water until the end! If the wind blows I remember to keep the mouth shut and it doesn't dry out as bad. I autocrossed the other day and went 5 runs without a water bottle. I was coughing and gagging a bit the last run because my youngest son forgot he had my water bottle and he didn't give me a drink when he was supposed to! I came in second to a Subaru WRX STI by .04 seconds and he was whooping me last year by 3-4 seconds a run. Life doesn't get much better than this and I keep forgetting how many months have passed!

Ed

Just wanted to clarify that my husband doesn't sit around thinking about recurrence all day (mostly adding this in response to Gary's suggestion that he get therapy). He's back to working hard, skiing, and, in fact, a couple of months ago was voted the fire department's "Most Valuable Player" (he's a volunteer fireman/EMT). He's actually got a very good attitude about it all - better than mine. And, no, he is not very old, has never been a drinker and has never smoked.

Also wanted to clarify for the people just diagnosed or in currently in treatment - there really is life after cancer.

Anita

Maybe you're the one needs the therapy;-) It wasn't him that created the initial post. Nothing to be embarrassed about. My wife had a nervous breakdown in my post Tx phase. I never postulated that he was a smoker or drinker (or old even), just an attempt to reach out to those who do indulge, that it is indeed very risky behavior.

I have just passed 2 year mark and I spend very little time thinking about the grim reaper any more (and I was one of those people with the 38% 5 year survival odds). My wife is fully recovered and we are moving on with our live's. Indeed there is life after cancer!

There was a study recently published that showed that optimistic HNC patients survived significantly longer than those who were pessimistic. (Allison et al, 2003, J. Clin. Oncol. 21: 543-548). Also, those living with others were more likely than those who lived alone to be alive after 1 year (post-treatment).

Thus the huge importance of support and encouragement -- the published statistics for HNC are NOT good (looking only at the patients who have treatment) and the treatments can be debilitating so it IS hard to be optimistic but...the many voices on this forum shows that there is a lot of reason for hope.

Also, after a long time with little significant progress re new treatments there appear to be good things on the horizon, another reason for some optimisim...

Gail Mackiernan
(using husband Barry Cooper's log-in)

This was a very interesting bit of reading. Lots of good vibes above. Thanks, Amy

A couple of nights ago we went to a very interesting talk by one of the leading cancer researchers in the nation. He is an epidemiologist, so he is studying the epidemic of cancer and the current and projected future trends. I'm adding this post to this thread because he is surely in the numbers game. Was actually a fairly optimistic talk.

Anyway, for what it's worth. If anyone is interested in more of what the high points of his talk were (I took notes), I could share them.

Anita

Having a recurrance during the last couple of months gives me a different spin on it. I think about this rotten diaease every day. Between the quality of life issues and what the future holds for me it's hard not to.
I still believe the stat's mean nothing to an individual. You will either survive or you won't.
How we choose to live our lives after cancer is different for everyone. Gary, I love the idea of
moving on and not even thinking about cancer. I'm glad you have come that far.

Danny Boy

Yes Danny Boy but to hedge my bets, just in case I DO die within the statistical probabilities, I bought a BMW so at least I can enjoy my last few years here on earth (I have been driving a pickup truck since 1982). I hope that you are enjoying MiniCooper (I followed your lead there).

I can certainly empathize with your frustration. I wish I could tell you that I have completely moved on and there are some days when other things take precedence, but it always comes back.

It certainly is an epidemic and the boomers are just now starting to add to the numbers. Kaiser is pondering building dedicated cancer centers. With all of the crap that industry puts out, plastics, fire retardents, MTBE, etc., It's more amazing that EVERYONE doesn't have cancer.

And to go along with what you said about surviving or not my H&N surgeon said it all boiled down to just plain luck...

Now is that GOOD luck or BAD luck that determines the outcome??

I believe in this world there are no guarentees and because of that, we should live each day as if it is our last and create the best relationships we can in life. The only downside to that is that if you are lucky enough (again, not sure if tat is GOOD luck or BAD luck ) to live to be 100+ is that you will need a large place to live so you can handle the vast number of friends you will end up with!

Missed you guys!

Ed (with the 2004 Audi A4)

From reading this forum thoroughly over the past couple of months, Ive discovered that the truth is Statistics are pretty well pointless. I am floored when I see situations of Stage I or II patients passing, and extatic when I see situations of Stage IV patients doing terrifically well. It just goes to show numbers are not of the same world as human beings.

Gary, man you found my weakspot. CARS. It seems in my short life the one thing that has been close to me and never hurt me is my cars. Since Im facing this nasty possibility of what might be going on, I decided to go ahead and get one more to stick with for a while, and its a BMW too! A 2001 740i or a 525i. Nothing eases my daily stress like a drive in my car... let me tell ya.

this was sobering to read.

Is it true from the original post in this thread that since I'm Stage IV I have a 20 to 40% chance of survival???

I was upset that everyone was telling me it was only 50%!

Jeeze, now I'm really in a tailspin.

And, YES, I read all the replies, about we are each our own statistic, live for today, etc etc. Why am I going through all this treatment for such slim margins?

Sometimes, I wonder if I might have enjoyed life more not ever knowing I had cancer and not going through these "therapies"...

If the odds are so bad, why ruin what few months I may have with the treatments that leave me devastated, fatigued, burned and poisoned.

Sorry, guess I'm just down after reading this stuff.

Hey Michael,

Don't even think about stats...after my surgery I asked my Onc/ENT surgeon what was my prognosis (I'm stage III/IV)...the eyelid shutters came down and he said maybe 1 to 5. Well, I'm still here, still enduring the occasional thrush outbreaks, ulcers, unable to eat what I used to, still scared, but life is good. It's just some shit that we have to endure, another experience in interesting pattern called life. I feel a bit guilty about how I'm doing OK, when my friend has just been told that her last dose of chemo didn't work (she's had about the most of radio and chemo possible)... her lymphs are big (arm and leg)...she has cervical, inoperable now.

You never know how slim your margins are, just luck of the draw, like getting it in the first place...I can understand how you're feeling, been there, and sometimes go back :-), but it will all become a blur when you pass this hurdle, you'll forget what you went through, only when people ask what is was like. Just keep on working, playing, ignore this thing, it'll go away someday. I always say I'm too busy to have cancer (even though that little dark cloud is still up there, becoming smaller day by day).

Cheers!

Tizz
P.S. The calcium mousse doesn't come in chocolate, the vanilla one is recommended for xerostomia patients

In my book you are willing to fight or you are not. Are we suggesting here that fighting for a 50% chance is worth it, and for a 30% is not? In my book I'll take getting burned, emotionally beat up, fatigued, and poisoned for the chance of life. I was a stage 4 patient, essentially circling the drain. I'm here 6 years from diagnosis in spite of the statistics. Everything on that list of side effects of treatment is transient. While life itself is transient as well, I choose not to go gently into the night

Hi all,

Someone sent me a good quote re this thread:

"Statistics can be tortured to confess to just about anything."

Cheers!

Tizz

First of all, tomorrow is promised to no one. You could be hit by a car and die instantly, this afternoon! Moreover, if the odds are 50% survival, that means half live. If it is 30% that means 1 in 3 live. You could be that 1 and THAT is why it is worth the fight. People DO survive. It is when it is zero that you might want to weight quality of life issues, but when people do survive, I think you should go for it - you could be that 1 in 3 because Somebody is going to survive and it could be you. The statistics vary depending on the population included, it may include many seniors, people in their 70s, who may not live very long without the cancer. Heavy smokers/drinkers are more likely to be on the losing side. People who don't undergo treatment are almost certainly going to die. I say go for the probability of survivng, not the certainty of dying! People do survive and thrive. The key thing to remember is that if 1 in 3 live, this means people DO survive! Be that one! - Candace

Another side of the statistics coin -- why are they so poor? One reason is -- late diagnosis. Too many people like my husband are diagnosed in advanced stages III and IV, even though they go regularly to a doctor or dentist. Read what ADA says (on the OCF web site) about dentists' responsibilities. Yet my husband, who goes 4x a year to his (supposedly top) dentist for cleaning never had his enlarged tonsil or the growth at back of tongue noticed (when I looked, obviously assymetrical amounts of tissue in both sites).

One thing to improve statistics that we, as patients or caregivers of patients, can do is improve the rate of oral cancer screening and educate our friends and relatives about getting screened, especially if they smoke.

I think it is pretty bad that there is still no routine screening for SCC cells in at least those parts of the mouth reachable by a "brush" (like that used for pap tests) -- while women have been screened for over 35 years for cervical SCC. Barry was tested at Hopkins for HPV and they also took tissue, using the same type of probe as is used for pap tests, ran it over his tonsils, back of tongue, soft palate and under tongue and smeared the scrapings on a slide, again same way as for a pap test. Then off to the pathologist.

Maybe in the future there will be some better screening method than just a casual glance by a dentist or doctor who is not really paying attention...

Gail

Gail,

There is a product called ViziLite which is recommended to be done once a year as a screening for cells that have changed and are not visible to the naked eye. You can read about it on the web site by checking under "Products" then "products for dentists". You can also read about it at this site http://www.zila.com.

We have recently added this product to our oral cancer screening protocol in our office and will be recommending this procedure to our patients on a regular basis (once per year).

I have to admit that although this product has been available for quite some time, it took my cancer to get us to start using it in our office. We also do the brush biosies also discussed in the same area of this site.

With or without the use of ViziLite, it appears that your husband's lesions should have been detected during a routine oral cancer screening. I am truly sorry to hear that it was missed.

I hope that Barry is doing well. I have been away since July 17th which is around the time that you joined this forum and I am not familiar with his current status.

Jerry

The Visilite has been on our web site in the products section since before it was actually available in the marketplace. This technology while helpful is far from foolproof and has distinct limitations. I know, I was a consultant to Zila when they acquired the product from the original developer. The secret is really in the vinegar (acetic acid) but that is a whole 'nuther story. It is very unspecific, but if it gets people to take the time to look properly it a good thing in my book. The fact that dentists and their staff miss this too frequently of do even engage in oral cancer exams is a disgrace. I just isn't that hard. In the dental section of this web site there are numerous articles in the additional information section written by the NIDCR science staff which attest to this lack of involvement. Dr. Wilck is wise to have adopted an annual screening in his office. I spend part of my time as an expert witness, usually representing people who are suing dentists, and ENT's for failure to diagnose, or failure to meet standards of care. They universally lose, or are settled out of court. My greatest hope is that now that we have a convert in our midst that he will be an articulate and informed disciple of the early detection saves lives OCF mantra to his colleagues. Hearing it from one of their own carries so much more weight than my words.... Already he has had a wonderful story published in the news media about his disease and transformation. I think it's time to make him a TV personality......

I went to multiple Drs, and 2 different local dentists AFTER I had a LARGE, SWOLLEN, HARD, NON-MOVABLE node on my right neck.

Not one of them even examined my tonsils, much less felt it to see if it was a likely primary.

Maybe wouldn't have made any difference in my case, maybe not...

I might have been Stage III at the time, who knows.

Bear in mind that the tonsils are hard to see - they hide along the side of the tongue. Dentists don't typically have the specialized mirrors that ENT's use and it might be much more difficult for them to visualize the tonsils and larnyx area. Although I am all for any kind of screening, I am not convinced that dentists are going to catch everything. Whenever they are screening me, they invariably check all of the highly visible areas that I could see myself - tongue, under the tongue, gums, inner cheeks, etc. I wouldn't rely on it as 100% screening. Some screening is better than no screening.

In my case the tumor got SO large that it was readily visible and they STILL couldn't figure it out (this large, 6x3cm, tan rubbery blob). They said that from literally thousands of patients they rarely have seen any oral cancer - maybe 2 or 3 at best. They were performing regular cancer screening long before I got my oral cancer and are much more careful about it now (because of me). My dentist is in an affluent area and maybe that's a factor. A big city dentist may see more oral cancer cases.

My gp missed it as well but at least he eventually gave me a referal to an ENT after 2 rounds of antibiotics did nothing.

My opinion now is that if you have engaged in risky behaviors such as using tobacco products, excessive drinking or have had viruses such as EBV or HPV than you should be examined annually by an ENT or H&N surgeon as a component of a regular annual physical exam.

Rod had a few teeth pulled a few months prior to his diagnosis. Even as close as 2 months before.His ENT said his tumor on his tonsil was so large (and the lump protruding from his neck) he cannot believe a dentist missed it. The truth is, some dentist are not doing screening for oral cancer,they are doing dental work. Thanks to hearing about Rod, the dentist I work for is now doing screenings and has just sent a lady to her ENT for something on her tonsil he didn't feel should be there. She said it's been there for months & her medical doctor checked it and gave her antibiotics????? Who knows what the answer is but I agree with Gary on the risky behavior aspect. Only trouble is like Rod at 37 years old, oral cancer isn't really on your mind.Hopefully more & more oral cancers will be found at an early stage.

Brian, I am hardly the TV type.

I am more confident now that my office has added the ViziLite exam to the cancer screening protocol that we have always followed. Although it will not help to pick up everything, it will show areas which are not visible to the naked eye and that need further examination and followup. My entire staff, from the receptionists to the chairside assistants, are very motivated in promoting early detection.

Gary, you are correct that a dentist will not be able to fully visualize the tonsils as well as the back of the mouth and throat. An ENT has the equipment to do that. Since my situation was different than most, as I went directly to the head and neck surgeon, I did not have an ENT involved in my treatment. I recently had a gastroenterologist do an endoscopy for another problem and he saw nothing. However, he said that he does not examine the tonsils and behind. Therefore, I am seeing an ENT at the end of this month. I have had 2 followup exams with the surgeon and he checks the surgical site, remaining lymph nodes, but not much else. I am not confident having him as the only one (besides my partners) being responsible for checking me.

As an aside, I am hoping to visit the NYU dental school with Eva Grayzel in the fall. She is hoping that my being there will help make a bigger impact on the dental students. Eva has been doing these speaking engagements for quite a while, but it will be new to me.

As far as the article that Brian mentioned is concerned, my office administrator was instrumental in getting the reporter out. We thought it was a good message to bring to the public. The article was published on July 17th, the morning I was leaving for Ireland for 2 weeks and I am first going back to work today. My undersatnding is that 10 people (not patients) called and came in for ViziLite exams. People do read the paper.

For those that are intertested, I just found a link to the article: http://www.phillyburbs.com/pb-dyn/news/111-07172005-515499.html.

You will, however, have to manage without the photos that were in the paper. You're not missing much.

At some time in the future, Brian hopes to get the article on the web site.

Jerry

Actually the article has been up for awhile. We can trust Sheldon to see that our news portion of the site is as curtrent as the day before we look at it. He's always working on it. Whether they are human interest stories, or scientific articles, our Mr. Sax is on top of it. Here is the link to the story in the OCF site. http://www.oralcancerfoundation.org/news/story.asp?newsId=859 (Without all the advertising I might add)

The news section of the web site is the second most popular section of the web site after the first general information page; oral cancer facts.

What ranking is the BB?

I am only asking cause I think I am guilty of many times navigating straight to the forums without checking news, etc.

I wonder if I am the only one doing this? :-)

I have to say, that at this point being pretty much convinced theres something there in my case (I now have a small ulcerated area on the back of my right tonsil, but oh well, cant do anything about it til my appt. on the 29th), I do agree with what someone said above that if it isnt 0 percent, 2 percent, 5 or even 10 percent chance like so many cancers out there (late stage Colorectal, Pancreatic, Stomach,) that are much more common and not to mention painful, its worth fighting for. Given all the data that go into even the statistics themselves, 30 percent is something. I had extreme pain in my abdomen for along time that my doctors couldnt diagnose and I couldnt even go out anymore sometimes, I was convinced THAT was something with my pancreas. Now in retrospect maybe that was a little over the top for my age, but not with the oral disease, it seems to be attacking younger and younger everyday, so the odds are going to be skewed no matter who you get them from.

I had to sit back and analyze some of my feelings the other day, and reading all the stories on this site had gotten me sad, for both those suffering here, and knowing what might be coming for me. I was beginning to feel like there was no other possibility, but going back to the car forums I visit frequently, the truth is the main people who visit those sites, do so because they had a problem and need something answered. I imagine theres probably plenty of people everyday who never come here and make it through just fine.

Michael - Because the message board is contained in a cgi bin, we cannot count the traffic to it, though there is little question that it is a busy part of the site. The milliions of hits the main site gets that we know of, surely are many more when you consider the traffic to this board. That cgi bin is the same reason that the message board has its own unique search engine, separate from the more sophisticated one for the main site. Like many of you, I have the message board saved as a favorite on my IE nav bar and just clik on it to see what is happening with everyone. And you are not alone in coming directly here. There are literally hundreds of pages of content with the answers to many of the routine questions here, but rather than read through it all, search the site etc., it is so much easier to just as a question here. Lazy, but easier. The answers are personal and that is a distinct attraction. Ditto the interpersonal relationships that we all develop. The difference is the answers drawn from the content of the site are contained in data that has been approved and reviewed by many different doctors from different diciplines. The strength of the message board is that it comes from personal experience. Each has its own unique value. Not everyone is interested in the latest news....they just want the interaction with people who can relate to their situation. Nothing to feel guilty about there... it's a primary function of the board - mutual support.

Brian and Sheldon,

Thanks for getting the article up. Wasn't aware that it was.

Jerry