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The list that is currently put out there where there is no disagreement is oral, cervical, anal, and penis,. You have named a couple that are duplications like mouth, tongue, and tonsil, which all get lumped into oral, some of the other's are still in the grey area without definitive proof, and in those not an established major cause.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Never said major, just a cause and I will always defer to your data base as your obviously much more on top of this stuff than I am. My list came from a slide shown to the Fl House by one of the speakers in support of the Gardasil Vaccination Bill in march 2007. The slide credited the American Cancer Society, Cancer facts and figures 2006.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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This board is getting very involved, perhaps disproportionately so, in the questions about HPV. The data is changing daily. One site which is very credible is this one. http://www.ashastd.org/HPV/hpv_learn.cfm But note that even with a good organization like this, the data is wrong on their site. there are more than 120 versions of HPV identified not 70, and this is a reputable group. The issue is the data is changing faster than even their web site. Can you imagine what this means for people that are looking at things that can't be quickly updated, that are in print?

ACS (to their credit) have spent lots of money developing position papers on things like the vaccine http://caonline.amcancersoc.org/cgi/content/full/57/1/7 which they have gotten published in highly credible places like the Journal Cancer.

But the take away that I wish for everyone to get here, is that viruses which are known to cause 7 major cancers, are a reality. We have little protection from them until vaccination became possible for some. But we have no viracide. If we could kill viruses, we would eliminate the common cold which is caused by a rhino virus. The amount of research on viruses in the US is mind boggling, and the data changes every day. Oral cancer is part of all that. I have rewritten parts of the OCF web site HPV page 6 times in the last three months. Next month we will put up PDF's on three important new journal articles as it relates to OC. But it is literally changing that fast. For a disease that had almost no changes going on for 50 years, things are really moving quickly now in he world of OC. That means that what we thought we knew is out dated, and many sources that we trust are behind the curve. Because we (OCF) focus on ONE THING ONLY, OC, we can (even with only a small group of volunteers and researchers that we work with) keep as current as possible. The are no days which go by when some part of the web site is not updated or added to. We are spending 15k in the next 60 days to build additional new parts of the web site that do not exist now.

Last edited by Brian Hill; 08-22-2008 04:11 PM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Brian, regarding the statistics about oral cancers attributable to different causes (smoking vs. HPV vs. no known cause), are the sample data for those coming out of Johns-Hopkins along with other places (which I know aren't all that many) which routinely test for HPV when there is no smoking history or--like in David's case--a history of smoking but only decades ago and for a couple of years? I gather not all cccs do this test, especially since it makes no difference in treatment right now.

I'm just wondering about a possible self-selection bias in the sample leading to those percentages because it sure seems to me that there are over 5% of people here on this board that have had oral cancer on the lateral tongue (not a location associated with HPV) and had no or only a distant history (like David's) of drinking/smoking. Most of the peoploe I have met here who fall into that category are women too. And I recall a conversation several of us had (most of whom fit in that description) where we each had a chronic tooth irritation at the site of our cancer before the cancer. It just makes me think that maybe irritation can be a cause for a small group of people and that doesn't come out as a significant factor because it's hiding in the other factors.

It seems to me that the sample of people who go to J-H for treatment may not represent fairly the population of OC population. They draw local folks, and then they draw people who come from afar because of their reputation and rankings in treating OC. Well who can come from afar? Are they more likely to be male (because men, even if they have kids, can usually more easily leave those kids in the mother's care if they go for treatment)? Are they more likely to be younger? To be older?

I don't know, but I guess before I totally by into what percent of the OC population has a disease caused by HPV vs. smoking vs. other unknown things I would want to know that the sample matched the overall population in important demographics. I assume that is an analysis that has been done at some point?

BTW, related to the original question, in terms of my own history, I did smoke for over a decade but I had quit completely for almost a decade when I was diagnosed. I never drank more than a glass of wine or two a week except maybe back in college when, like most college students, I did have a few too many beers from time to time. I think people who ask the question are asking to make themsleves feel safe and I don't think it's an educational moment to tell them "yes, I smoked but I quite a decade before I got the cancer" since that would imply to anyone who does smoke that there is no point in quitting. I bascially find the way people ask that question annoying usually, although I answer honestly. As everyone else has said, it is probably something genetic in my case there as well that caused the cancer (I say this with more certainty since I have had two kinds of cancer in my 40s).

I am quite outspoken about the benefits of the HPV vaccine, however, espeically in this area where there is a lot of distrust of the pharmaceutical industry around this issue.

By the way, right now, I'd be really happy if we could just come up with a viricide for the common cold! I have been up coughing and sniffling for two nights.....


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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I'm certainly not a trained scientist but when you consider that there are over 200 different kinds of cancer and they know certain things cause some of those cancers, there still must be some basic link that has escaped the best minds out there. (Remember I like things that can fit in boxes.) Tobacco, for an example, has been linked to many cancers but it doesn't cause cancer in everyone and if it does "cause" cancer the person doesn't get all the cancers it's linked to. So why do some that smoke a little get a cancer associated with cancer and why do some that smoke a lot never get any of the forms of cancer related to tobacco. Why if you smoke and you get OC, why don't you also get lung cancer and vice versa? So so many variables to consider yet "we" know tobacco causes cancer. Same with HPV but so far to a lesser extent.

Maybe one day...


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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David - cancer is a disease that changes things on a genetic level. It is a disease of genetic aberrations. Those can be naturally inherited, caused by an outside toxin like those in tobacco, the air we breathe, what we ingest, industrial chemicals (etc. ad nasueum), caused by radiation, caused by living organisms like viruses. Everyone one of those things begins by altering/damaging the genetic make up of a cell, starting a cascade of further events. You cannot simplify this they way that you want to. Cancer is over 500 individual diseases. Everybody has to accept that it is in your genes as much as it is in your lifestyle choices. That genetic predisposition is something you can't do anything about. That argument should end things for people, because if you can't get there in your mind, you will never come to terms with "WHY ME" which in many cases there are no absolutes for.

Even if you do identify tobacco (as an example) as the cause of your cancer, you have to match that carcinogenic cause with your individual genome and proteome, which make up your uniquely individual predisposition (or protection) to allow the development of cancer to take place. If you can't get you mind around that it is the combination of these two things, one of which you can't know about completely or control, I can see why you don't understand why tobacco is not a cause of cancer in everyone that smokes, HPV16 isn't a cause in everyone that gets it, not everyone that is infected with the human T-cell leukemia virus#1 gets blood cancer, and so on.

And people who smoked for a decade of their life some time in the past have not necessarily rid themselves of the damage done during that period of time just because another decade has past. Yes our bodies repair, and to some extent (individually) recover as times passes and the physical insult diminishes, but it is not like being a never-smoker. You may have caused damages that are now only peripherally associated with the development of a disease, but still make you less than 100%.

We do not fully know the extent to which HPV and many other causes take us to full malignancy when you compare that to what we know about the tobacco process. We have just had a much longer time, and spent more money, to look at tobacco and its mechanisms for being a cause.

I am going to quit talking about all this. It serves no purpose to most of the people that come to the boards, as it does not alter treatments or choices for them. It takes my time from the emails and other things from people that are in the fight. That does not mean that if I read something that is incorrect on these boards I will not challenge it or just delete it as bad information that should be perpetuated.

For those of you who wish to be activists in this battle, particularly as it relates to the new NPV threat, I commend you, but you need to bone up more than you are if you are really going to make solid arguments about things. I suggest that you start here, and get the basics.

We know that all cancers (neoplastic transformations) result from changes (mutations) in genes which control cell behaviors. Mutated genes may result in a cell which grows and proliferates at an uncontrolled rate, is unable to repair DNA damage within itself, or refuses to self destruct or die (apoptosis). It takes more than one mutation to turn a cell cancerous. Specific classes of genes must be mutated several times to result in a neoplastic cell, which then grows in an uncontrolled manner. When a cell does become mutated to this point, it is capable of passing on the mutations to all of its progeny when it divides. Genetic mistakes randomly happen each day in the course of our bodies replacing billions of cells. Besides these random occurrences, genetic errors can be inherited, be caused by viruses, or develop as a result of exposure to chemicals or radiation. Our bodies normally have mechanisms that destroy these abnormal cells. We are now discovering some of the reasons this fails to take place, and cancers occur.

More about the genetics of cancer, this requires study and can't be spoon fed.

http://www.oralcancerfoundation.org/facts/cancer_genetics.htm

http://www.oralcancerfoundation.org/facts/pdf/oncogenes_and_cancer.pdf


Last edited by Brian Hill; 08-23-2008 02:02 PM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Yeah there are many things I can't seem to get to fit in my box world. I still can't seem to get a grip on how our universe got started...I mean what was there before?, much less that it's still expanding....I mean expanding into WHAT? My genetic pool just won't let me get to the other side.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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No matter the reasons for getting cancer it is important to remember that no one deserves or should ever blame themselves for having it.

All people have bad habits, so I feel we should remember the words of George Carlin and try to always be sure we are helping one another do it George�s way:

�Don't take guilt trips. Take a trip to the mall, even to the next county; to a foreign country but NOT to where the guilt is.�


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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I always get asked if my cancer was because of smoking. I did smoke, but for about 2/3 years so the Doctors don't think it caused the cancer. I do feel that sometimes people think "well it serves her right" if I Say that I did smoke. But maybe I'm just paranoid! No one has actually said it to me though.


Hayley, 19.
Diagnosed at 18 with cancer of the larynx (T4n2) on 20.11.07
Taxotere, cisplatin and 5FU x 3, carboplatin x 7 and 35 radiotherapy treatments
Found out I am in remission on 21.08.08

www.kickingcancersarse.blogspot.com
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I don't know what caused my cancer...All I know is that I have it, I want it gone and I don't want it to come back.

Nobody deserves cancer or ill health. And nobody has the right to act like someone deserves a disease because of something they did or didn't do in life. I don't care if someone smokes five packs a day...they don't deserve this terrible disease. If someone thinks this way; then, they are just ignorant and clueless of life and feelings.

We're all going to die...no way around it. I'm fairly sure..99 percent sure that no matter what we do...we will die from cancer, stroke or some kind of heart ailment. Acting like someone deserves the "Big C" is like acting like someone deserves Alzheimer's because they're living too long...

Cancer is just a terrible disease that needs a cure...It seems like I know too many people that have or had cancer in the last few years...Something is wrong...it's just not right.

And HPV..why now? HPV has been around a long long time...is something triggering it in the last 10 years or so?

Raymond


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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