Yesterday at lunch, I saw another survivor! He had all the signs: a certain facial hair pattern, a slightly reddish skin on the neck and a slightly drooping left shoulder (only one of us survivors would have noticed.) The radical neck scar was on the side away from me so I couldn't be 100% sure. Then when he got up to leave I had to ask. Sure enough Left tonsil SCC, radiation and 2.5 years doing OK!

That makes 4 people I have met locally that have this Cancer and I know there is a 5th because she posts here at OCF from time to time.

What I want to know is what is in our drinking water! The person I met yesterday never smoked. I want to know how the statistics are collected for this cancer. I want to know if we are having an epidemic of this crap. 5 people counting me in a population of 80K seems in the last 3 years like we have a much bigger problem! (I am sure there are more besides)

Mark, I have wondered so many times why this cancer seems to be invisible until you get it or know someone who has it...then you start noticing folks, like you did, with the tell-tale signs.

This really lights a fire under me. I mean, I'm a fairly intelligent person; I pay attention to things; I am aware of medical and scientific news as much as I am of political and social issues. I've been thinking, how have I totally missed this? Have I been too busy and too self-absorbed to realize this cancer is such an agressive threat? No, I've decided that oral cancer may just be the red-headed orphan of cancers that nobody wants to be associated with (no offense to red-heads: I'm one!) Where are the warnings, the public service announcements, the billboards, the nurse-made bulliten boards in dentists' offices? I guess it takes Oprah to give attention to issues these days. Maybe we should give her a call.

Sorry I'm ranting. It makes me want to start an advertising campaign on my own!

Christine

Yeah I'd like 2 know how I got this cancer! My dentist said when he was in school that this type of cancer may only happen once in his lifetime of patients - yet shortly after me some1else got oral cancer.

My surgeon said that he has seen an increase in young (I'm 40-not that young 2 me) women. They didn't know the cause.

BTW I felt kinda left out since there so much promo 4 those w/breast cancer. You know the pink ribbons & walks. Odd grrl out, that's me. :p

It's all in the numbers Christine. 30,000 new oral cancer cases a year is relatively small for a disease (cancer) that overall kills 550,000 a year. Many consider this to be a "sin disease", i.e., a result of vices such as tobacco or alcohol abuse (although don't tell this to the folks who neither drank nor smoked) which are reported to be about 25% of the diagnosed population.

Certainly the poisons we have put in our food supply and environment must play a role as well as genetics. Unfortunately the science just isn't there yet with definitive answers.

Statistically, according to the ACS, the new case number has declined slightly.

Hi all
Interesting thought clusters... my Dentist has 3 of us in two years... he said he would expect to see no more than one in his whole lifetime... But I have smoked stopped 6 years ago.. and I still admit to a glass or two of red wine...
Helen

Well, my husband takes complete ownership of his tobacco and alcohol use. I know there are many with this disease who never smoked or drank (or who did so on a very minor level). He smoked a pipe for 29 years and was a social drinker. He knew the risks, yet like so many continued with a tobacco habit that was very hard to shake. He did not realize that you don't have to be an alcoholic for the mix to increase your oral cancer chances so significantly. Would that have made him stop sooner had he known? I don't know. But, the point is that it seems to take somebody famous to raise awareness about any kind of disease these days...I'm thinking Michael J. Fox and Mohammed Ali. Roger Ebert had a salivary gland tumor a while back and noticeably has a speech defect because of it, but I haven't been able to find out much about his experience. Sometimes when I'm cleaning my husband's trach tube with a pipe cleaner I think about how often I saw him clean his pipes with one. That's a juxtoposition I'd like to see on a billboard.

Christine

Hi Christine
Suppose the hardest thing about any cancer is that sometimes there are no answers... We all drive or travel in cars.. some will die... some will get hurt... my brother his wife and 11 year old twin boys escaped death by a whisker... life is precious.. but as fragile as crystal... heavy thoughts tempered with a glass of wine... God loves a gambler...
Helen

I don't think that many of us think that our vices will kill us - the other guy maybe! Moments ago I just heard Dr. Dean Edell (on the radio) talk about the relationship (and sensationalism of the news media) about the so-called link between oral sex (caused by HPV) and oral cancer. (the actual rates are infintesimally low). He stated that 90% of all oral cancers are caused by alcohol and/or tobacco. So where did he get his numbers? And where does the 25% number fit in (non-smokers/drinkers occurence of oral cancer). 15% is a pretty healthy variation.

I smoked and drank at one time in my life and always worried about lung cancer not oral.

About raising awareness - look at the way gays handled HIV. Hepatitus C is a much bigger killer than HIV yet it doesn't get the notoriety(or the funding - not to mention that they estimate 4.5 million cases of undiagnosed Hep C in the US today). But they got a disportionate amount of funding for HIV research as a result of their efforts (not that it won't have long term benefits for us all).

This is a major part of Brian's behind-the-scenes plan of attack to get the message out. He has enlisted celebrities. All of this takes vast amounts of money so don't forget to donate some tax-deductible dollars for the cause. Regular monthly donations would be greatly appreciated I am sure.

Indeed. We just lost a guy from work a couple of months ago to metastatic oral cancer. I think cancer, like other diseases, has been highly politicized. Which is why some get the all the press at the expense of others. You can bet that as the news of the HPV link to oral cancer is publicized more and more folks will be looking down on it's victims. Not that I really give a damn what other people think of me. Like other folks, when I was practicing my vices I was more worried about lung cancer and heart disease. I would have never dreamed in a million years that at age 40 I would wind up with a tumor at the base of my tongue.

-Brett

Well, folks, for those of you feeling left out......I have had breast cancer and oral cancer. Guess what? Neither is fun! Breast cancer may get a LOT more publicity and funding to be sure but it didn't make the diagnosis or treatment any easier to bear. I HATE all cancers.....my past habits contributed but let he who has no sin........well you know the rest.
God bless
Judy U
PS Really bummed out with Packer's passing so am angrier than usual!

OK, I've only got a couple minutes here but this posting needs to be answered. As far as Dean Edell MD goes, he doesn't have a clue about most of the things I've heard him talk about, and where he ever got the 90-10% numbers is beyond me. (I talked with him a year ago and he had no interest in telling the HPV oral cancer story.. .. My how things change. Not on any source that I have ever found from the NCI, to private institutions, has anyone ever pulled that 90-10 ratio out of a hat. So his fact checker that helped him with his story got it all wrong. The number that is quoted by the ADA, NCI, OCF, and all others that I see is always 75-25... but get this, this number was one guys (Mashberg) BEST GUESS in a paper with no scientific study behind it years ago, and it has become folk lore and fact by 0 challenges to it over the years. There hasn't been a peer reviewed study that has ever yielded an exact number, including the 75-25 one, which is actually from ANECDOTAL INFORMATION derived form a variety of sources, and is a best guess today. Last week I talked with our board member, Dr. Maura Gillison at Johns Hopkins who, following up on much research that was done before her, is the one that broke the HPV cervical/oral cancer relationship, which is a fact. She is one of the world

Right on Brian! I love it when you get yourself all riled up!

Danny G.

Wow Brian,

that was an interesting read.

we need to do more to support your efforts.

one area that i think can be useful is to get OCF listed on the US Gov list of charities for gov employee check off... that way it comes straight out of our checks... it the United Way for civil servants.

should i get the info so that OCF will be listed in the next sign-up period?

keep moving those grains of sand, but don't forget to take time to enjoy the stream too.

cu,
larryb

Expanding on my thought, Has anybody given thought to the possibility of Chernobyl effect? My radiation Oncologist said that my cancer started 7 or 8 years before my diagnosis. I recall speculation that we would see an increase in cancer worldwide because of that event, especially lung and digestive tract. Then there is the floride issue, yes there are concerns since the 50's about the long term effects of floridated water and even studies that seem to show cause for concern. Then there is arsenic, a known cancer agent, found in many things but most notably pressure treated lumber (something I had a lot of contact with about 8 years before my cancer), or lead another item that I have had occupational contact with. Also fungi! many fungi create strong carcinogens as a biproduct of their life cycle....

larry-b.. That would be fantastic. That's what has to happen!!! We all have to look around us and figure out what can we do to make it a reality. Danny talked to his girl friend the TV executive (he didn't say if this was pillow talk or not...you know, getting her to agree to something in a moment of weakness) but however he did it, that break is HUGE! HUGE! HUGE! Everyone has a contact.

One guy wrote me today and said that he belongs to a cycling club in DC. There are 300 members. Would I be willing to silkscreen 350 t-shirts with the foundation

Mark, while I don't usually don't like to speak in absolutes, we know what causes our oral cancers. Other cancers are more obtuse. Everything you have said is true, but not necessarily for oral cancer. If you didn't end up here through lifestyle choices ( alcohol and tobacco) you almost certainly came to it through a virus. Only about 5% come from unknown causes.

WE DONT KNOW S--T!

BUT I absolutely loved the post before that! It made me dizzy reading it...talk about fire-me-up!

If we think it's alcohol then remember the hundreds of compounds including tars and resins dissolved in the "alcohol" like charred wood compounds in the case of whisky, scotch, bourbon, all of which are aged in charred oak barrels. Or in the case of beer "pun" the various chemicals that are introduced as preservatives. OH and lets not forget the pesticides used on the grains as they grow. Or how about the barbecue? we have heard for years about the cancer agents in BBQ food. Or better yet lets have a shot of whisky and a beer during our steak BBQ dinner,and sit around campfire afterword. Think of how many chemical compounds are in that! Yes we think we KNOW what causes oral cancer BUT we don't yet have anywhere near a complete list. I hate to say it but that less than 5% sounds like a Dr. Dean kind of number. A slightly fudged factor! After all look how far off the numbers were for HPV! (yes I was the debate captain)

We barely have the slightest idea what causes this crap and MUCH worse we barely know how to cure it!

Mark, the cause of my tonsil cancer is the biggest mystery in my life that may never get an answer to it. I never smoked and never drank one can of beer in my life. I have a very healthy family history with my grandparents and parents dying at a very old age. When I was diagnosed, I was in my mid 40's, considered relatively young by my doctors to develop cancer. My oncologist told me that the EB virus in my body was at a very high level when I was diagnosed but he was not sure of the correlation between EB virus and the type of cancer I had. In Hong Kong, the number of patients with tonsil cancer was and is very small and if there are any, they are usually heavy smokers or those with very poor oral hygiene.The hospital where I was treated is the biggest cancer centre in Hong Kong and yet my oncologist could not give me valid statistics about my illness. He could only quote cases of NPC( nasophargenal(sp?)), a very common cancer among male smokers in southern China. In fact my oncologist told me that I was treated as if I were an NPC patient and that's why every time I had my appointment, he would send an endoscope to check my nose! He stopped doing this for about a year now. Before I found OCF, I felt so lonely because I could not find a survivor with tonsil cancer in my place to talk to. No doctors can give me an answer to why I am so 'lucky' to develop tonsil cancer. From the Chinese doctors' point of view, pollution, diet, a person's character,lifestyle, continuous stress, sudden encounter of life trauma.. can be possible causes.Even though my oncologist told me in the last appointment that I am at present free from tumor recurrence, my anxiety is always there since if the cause is not known, I have no way to put it under control. Is there really nothing we can do to prevent it from recurring?

Karen stage 4 tonsil cancer diagnose in 9/01.

Mark, you are debating the wrong issues. There are tons of things in our environment that contribute to genetic mutations that can potentially cause cancer. Some have to act in unison with others; some require that your unique chromosomal make up have a certain defect or missing piece that allows the process to start. This never going to change even if we find a cure for cancer

Brian,

You mention that for some 95% of us we know what caused our cancer; that if it wasn't alcohol or smoking it was viral. Is there any virus other than the sexually transmitted HPV or can HPV be transmitted in a any other way? Without going through personal stories I have lived a celibate life even before I was ordained. I wondering if I'm one of the lucky 5%ers.

I'm still trying to return my life to the "new normal" it will be so I'm not sure how ready I am to become an activist. I still don't know enough about most of this. I do know, however, that there are now thousands of families in central NJ who atleast have heard about this cancer and that there are a few hundred young people that know alot more about it then they did before my diagnosis. For now thats the best I can do.

As people are talking to thier bosses and supervisors and such to see what thier companys can do please know that I am talking to my Boss to help those doing the research find a cure.

Peace,

Fr. Mike

Absolutely we have an excellent opportunity to SIGNIFICANTLY reduce SCC oral cancer mortality.

I do not however, believe we will have a great deal of success eliminating sexual activity, alcohol consumption, or unfortunately all tobbacco use.

And I understand that Tobbacco is the leading cause agent for a very high percentage of Oral cancer. What doesn't make sense are the numbers: We know that the longer you are in contact with tobbacco products, the greater the odds of this disease. We can assume that it is a matter of contact between cells of tissue and the carcinogens in the tobbacco. Why then do we see the disease in people whom had modest contact with tobbaco, And many more people with no disease and heavy contact with tobbacco? I understand that the risk increases with higher use but I don't believe it is increasing in the correct proportion to the cell contact rate.

I did a fair amount of reading on the subject of alcohol and once again interesting quirks in the reaserch. Anecdotal evidence seems to suggest that alcohol is an agent, but a lot of people drink and do not get cancer. Another study using mouthwash (which often has more alcohol than wine) showed no increase in cancer.

I am not really trying to spend a lot of time debating things that of no significance here but to me the circumstances that cause this cancer leave me with a desire to dig deeper. I wonder if the "Life Choices" issue causes "experts" to stop thinking outside the box? Maybe it is some other agent together with the alcohol? Just as two years ago hardly no one would have believed an HPV link and certainly no one would believe 25 to 50 percent! (incidently, evidence supports that HPV is able to invade easier if the person drinks and/or uses tobbaco) When I said we barely KNOW what causes this, I meant; I do not think we know all the possible combinations of events and agents that might cause the first cell mutation and I believe it is an activists duty to ask the questions that require outside the box thinking.

Yes, I have unresolved guilt that my lifestyle caused my cancer. Using the phrase "lifestyle choices" brings me very close to the anger I have previously professed to not have. It is a slap in the face kind of expression. My lifestyle choices are a whole lot better than some, and there are people here that are better than me. I smoked very little but I did smoke. I drink some, but I deny being in denial about how much. I have been alive on the planet so I probably have come in contact with HPV.

What I really want is a perfect cure for this damn disease and that is a long way off! We truly, barely know how to cure it. If we understood EXACTLY what caused it perhaps a more effective prevention program could be effected....

5% of 40,000 is still 2000 and they deserve to know more.

Fr. Mike, I have not read anything that suggests that HPV is transmitted exclusively by sexual contact. It is entirely possible and plausible that they can be transmitted in other ways.

Say hello to your boss for me would you?

PS Our new pastor is also a OC survivor, base of tongue! (one of the 5 people in our town that I know of)