Just wondering how many smoked or drank????
Im 54 started smoking at 21 stop 6 years before my cancer, have not had a drink of anything for 26 years. My doctors say it was my smoking.
I was inform that this is the leading cause for OC. I have not read a thread on this but Im also new to this great Web site.
I smoked and drank; I smoked about a pack a day for 15 years and I drank socially, nothing to heavy a beer or cocktail every now and then. I quit smoking in Jun after my Dx haven't had a drink since then either. My Dr says drinking is only a cause if its done to excess. So I'll probably have drink some where down the road. I haven't really thought about it though.
I smoked from the age of 18 to 29. I told myself I'd quit before I hit 30, and so I did. I am now 48yrs. old (49 next mo), so that was 18 yrs. ago that I quit. Every doctor I told, didn't seem concerned since I quit so long ago. They tell you to quit, which I did and still got it. Hey, who knows what caused this?? As for drinking, I'd say I'm a social drinker. Maybe a beer or glass of wine once a week. I've only had one glass of wine since treatment ended. I have read that there is a high recurrance rate for people who drink heavily. But again, there are so many other things all of us are exposed to in everyday life.
I smoked from age 15 to 18. Hardly drank, ever. Was 59 when I got scc. I have no doubts that there was no relation to either as a cause.
Jerry
I quit smoking 35 years ago and only drink beer and only on a social basis. I was a light smoker, maybe 10 a day. Since I quit I have been a exercise nut and always watched what I ate. My doctors still asked the smoking question as if it may have played a role. Now I am told HPV may be a cause but since that is a sexually transmitted desease and I have been faithfully married for the last 17 years and I know my wife is just as faithful, I can't see that connection either. I understand that Johns Hopkins performs a HPV-16 test that won't change anything except studies have shown that if the cancer was caused by HPV-16 the reoccurrence rate is lower than with tobacco and alcohol. I haven't had a drink since Dx but I haven't really been in a social climate. I KNOW I don't want to do ANYTHING that MAY cause a reoccurrence but that is a topic for a question I want to Post. Maybe soon is the time.
The numbers I have read are that smoking and/or heavy alcohol use are the primary causitive agent in around 80% of OC.
I quit smoking in 1976, pot in in 1986 and alcohol in 1995.
Go to this link:
http://www.oralcancerfoundation.org/tobacco/index.htm And then this one:
http://www.sptimes.com/News/61599/Floridian/He_wanted_you_to_know.shtml
There is no question that current or recent smoking raises the odds.
But the causal link appears to be less clear for people who quit smoking, depending on how long ago they stopped. For example, my husband -- not a heavy smoker to begin with -- quit more than 20 years ago, and his doctor at Hopkins CCC says he considers him to be in the same "category" as patients who have never smoked.
As for HPV, a CDC web page about the new vaccine, Gardasil, notes that it is possible for the virus to remain in a non-detectable dormant state and then reactivate many years later.
So who knows?
The Mashberg article, which now a decade old is still quoted the most at cancer conferences in relationship to the % of OC patients in which tobacco was a contributing factor, uses 75% as the number. Clearly in the US, the etiology of this disease is in transition. Tobacco use in the US has declined every year for the last 12 years. If that is the primary etiology of OC, then how can the occurrence rate of OC stay at the same level, and even increase slightly this year? (Almost 1,000 additional cases. ACS projections based on SEER nubers.) The fact is that because the fastest growing segment of the OC population is no longer the typical over 50, 2 to 1 black over white, 3 to 1 male over female, tobacco user - and is now someone between 20 and 50 who is a non smoker, predominantly white, educated, and with females slightly edging out males, they believe that HPV is the replacement causative agent keeping the numbers high and where this new sub demographic is coming from. Smokers and tobacco chewers however are still at the top of the pile in total numbers. But as America loses its love affair with tobacco, viruses are taking its place in the OC world.
Hi guys,
I had smoked for 20 years - about 1/2 pack a day and did not drink. My ENT told me at the end of our first appointment that I had 2 weeks to say good-bye to the cigarettes. He flat out said if I wanted a chance at beating the cancer, the smoking had to stop. I have not had a smoke since mid-night March 29, 2004. I haven't even been tempted. I do now enjoy a couple of beers a week -never cared for the taste pre-cancer but I guess my taste is altered just enough that it's OK and the clean rinse on my throat is great-it's the only drink besides water that isn't slimy to my throat. My doctor is OK with the beer in moderate amounts - he says alcohol is more of a risk factor when combined with the tobacco. So all that to say that smoking was the likely cause of my cancer.
Pam
I am so glad to see this subject discussed. I smoked some in high school, college, and early adulthood. I quit smoking the day my husband got home from Vietnam, in 1969, and I haven't had even one more cigarette since then. I was 62 last year when my SCC was diagonsed.
My doctor asked if I had ever smoked, and I said, "Yes, 37 years ago." He said that that, then, was the cause of my cancer....that the statistics say that even long-ago smoking is now considered a causative factor. I don't personally agree, and everybody's comments here seem to back that up.
He said that if not smoking, then it was caused by genetic factors, and it would be better for me if it were caused by smoking.
Hmmmmm......
It isn't ringing true to me.
My cancer developed on the gum of my upper jaw in a place that had been irritated off and on for several years.....or longer. It couldn't have been cancer for that long....could it?
When the cancer did develop, I didn't immediately become concerned because I was so accustomed to having that area give me problems.
By the time I became concerned....about 9 months before my diagnosis....my dentist didn't recognize it as a problem......even though I was complaining then of earaches on that side. Two months before my dx, he cauterized the area, and did not have me return for him to check it. Two weeks before my dx, he scraped and cauterized it again, and did not have me return.
I am trying to figure all of this out. I know that the dentist goofed big-time, but that is in the past. However, knowing that this cancer was in my mouth for longer than necessary is pretty dis-heartening.
Also...here's a new question: Will all of that cauterizing and scraping and....finally....the biopsy stir up the cancer cells and free them to metasticize? My surgical margins were clear and my neck nodes were all negative, though the lesion was pretty large (T2, based on size and length of time it was present.)
HPV is an STD, right? I can't imagine how I could get that, so I will dismiss that as a cause, though I wouldn't mind being tested just to find out.
If not smoking 37 years ago, and not drinking, and not HPV....what could be the cause of my SCC? Most literature no longer lists constant irritation of an area as a causative factor....but isn't that what smoking does?
I suppose that many of us won't ever know for sure what caused the cancer, but it would help to know how likely recurrence or additional primaries are, and the cause would be significant in determining that.
I look forward to reading other histories and opinions.
Brian....You mentioned that as smoking diminishes in the US, viruses are taking its place as causes of OC. I would like to explore this topic more. I recently had an irritated gum (much like the one that became cancerous) in another area (of course, since the original area is gone!) and my periodontist said that it was most likely caused by a virus. It took 2-3 weeks to resolve. I feel like this was what was going on for several years in the area that became cancer. It could not have been malignant for several years, could it? It would have gone everywhere in that time.
Hmmmmmm (again)....I would really like to hear more about non-tobacco causes.....and about viruses other than the HPV virus.
[quote]The fact is that because the fastest-growing segment of the OC population ... is now someone between 20 and 50 who is a non-smoker, predominantly white, educated, and with females slightly edging out males, they believe that HPV is the replacement causative agent keeping the numbers high and where this new sub-demographic is coming from.[/quote]With all the publicity about the new vaccine and HPV as the causative agent for cervical cancer -- the TV and magazine ads are everywhere! -- I wish there was more emphasis on the link to oral cancer as well. According to 2006 estimates on the American Cancer Society website, there will be about 9,700 cases of cervical cancer diagnosed in the US this year -- and about 30,000 cases of oral cancer. Granted, most of those OC cases will likely NOT be HPV-related, but still...
I notice that the prescribing information for Gardasil makes no mention of a connection between HPV and oral cancer. On the main part of the OCF site, I've seen several scientific studies on HPV in OC cases, including one last year from Sweden that found that about 35% of the cases studied were directly attributable to HPV. Brian or Gail, or anyone else who follows the figures and is knowledgeable about HPV, have these numbers just not reached "critical mass"? Is the idea of HPV as a cause for OC still too new that meaningful statistics are not yet available?
The vaccine is described in the prescribing information as "indicated in girls and women 9-26 years of age" -- you'd think that Merck would jump on links between HPV-16 (one of the four types the vaccine protects against, and the one most commonly found in studies of OC tumors) and oral cancer, as that would open the marketing to males as well. (Ka-ching!)
Hi August,
Sores in the mouth that are commonly called "apthous ulcers", are caused by a virus. They will usually go away in 10 days to 2 weeks. They appear as small white craters, with a reddish border and can appear as a single ulcer or in groups. They will appear more commonly when a person is run down and their resistance is low.
I don't agree that constant irritation is not a possible cause of scc. This is not my opinion alone. I have discussed this with the Chairman of the Department of Otolaryngology and Head of Neck Surgery and Immunobiology at Mount Sinai School of Medicine in New York. He referred me to
www.pubmed.com Jerry
When I was Dx'd with Hep C (as part of my cancer workup) they informed me that my case of Hep A in 1977 was actually "C") and they didn't have the diagnostic tools to properly Dx it. Things are always changing in medicine.
Bear in mind that many radiation therapy techniques such as 3D conformal, IMRT and Proton Beam were originally developed for prostate cancer.
Many times when new drugs are developed they have no idea what they will cure so it's practically a "crap shoot".
Gardasil is not yet "indicated" for oral cancer by the FDA hence it would not be mentioned in the patient literature.
EBV is also suspect in OC.
Some current OC clinical trial links:
http://www.clinicaltrials.gov/ct/show/NCT00021424;jsessionid=6DF579B4148C6FFEA19500D0F887AC3A?order=34
http://cancer.uchc.edu/news/releases/oralcancer.html OCF does indeed have articles on this subject -
See:
http://www.oralcancerfoundation.org/news/story.asp?newsId=1467 http://www.oralcancerfoundation.org/news/story.asp?newsId=1419 http://www.oralcancerfoundation.org/news/story.asp?newsId=1370
Gary --
Thanks. I did my OCF main site search using the term "HPV-16" so missed those.
I was pleased to see in the UPI story (last link) that Merck is indeed looking in this. Poor UPI has fallen hard from its glory days and has only very limited distribution; I know the paper where I work (with one of the largest circulations in the US) does not subscribe.
Well there are lots of questions here, and Gary has answered much of it. First you have to remember that when you go through clinical trials with a new drug or vaccine, that it is a pretty specific process. Guardasil was tested in the trial on WOMEN for HPV prevention related to CERVICAL cancer. They sell based on an approval for that. Does that mean that that is the only thing it will help? Nope, just that that was the basis for the FDA approval, and its use for anything else would be considered
Brian,
I in no way am an authority about the matter of whether or not chronic irritation can lead to cellular changes that could then lead to cancer. My renewed interest in this topic came about as a result of my reading an article by Dr. Eric Genden.
I had been taught in dental school (many moons ago) that chronic irritation could lead to oral cancer. In trying to come up with a possible cause for my cancer, having eliminated the known common ones, Dr. Genden's article prompted me to contact him. His credentials, as listed in my previous post, seemed to indicate to me that he knew quite a bit more about this subject than I did.
Although there may be many authorities that feel that this may not be so, there are others that do. We have to choose to believe those that make the most sense to us. I agree with you that sores caused by dentures probably have nothing to do with the development of oral cancer. Most people would have sore spots adjusted way before they would reach the chronic stage, as they can be very painful. However, there can be areas where long term irritation to tissues could occur without pain and can be ignored by that person.
This is probably a topic that could be debated for a long time and that is not my purpose. I would just like to leave it out there as a possibility.
Jerry
As I said, you are the doctor not me. I am not ever going to be insinuating that I would understand this as well as you. I am completely dependent on the doctors that I have on the advisory board. Their position controls the foundation's positions. I only speak as a patient. If you found good documentation for this, I would like to have copies of it for my next board meeting. I would like to ensure that we are putting out the best information possible. Certianly we can agree on one thing - that while we know where the bulk of oral cancers are generated from, and the genetic links that predispose or protect inividuals from the disease, in cancer there is no such thing as an absolute at this time.
This has been great information.
I have another question, that I don,t think anyone can answer but I will ask anyway.
I heard Smoking 75% cause heavy drinking, poor dental care, life style, HPV.
I know of some that have none of this,still Got OC. I know of others Smoking & heavy drinking has been a part of there life.
There are those that Smoke and drink never brush there teeth, live long lives.
Is there any information why some of us get it others don,t?
It is all in your genes. Some people are genetically protected from a variety of ailments; others are genetically predisposed to get them. Now that we have mapped the human genome, every year there will be discoveries about what genes control what. These discoveries will ultimately lead to many things from disease prevention or cure, to the more gray area of altering human beings in other ways.
I smoked from about age 18 until diagnosed with BOT in April of this year. I was smoking 2 packs or more per day until DX day. Quit cold turkey after we met with my ENT to be told of all test results. Needless to say, should have quit years earlier but honestly never tried. My ENT tried to be nice by telling me not to be kicking myself as 8% of all BOT cases involved people who never touched tobacco. I still feel that I brought it on myself. Never have drank much over the years and feel no cause associated.
Bill D.
William, if we all spent our time beating up ourselves for the bad choices we have made in life there would be no room for anything in our future. The only question now is, what you are going to do with that time. The fact that you are here, is a good thing... some of that future might be spent helping others, or keeping others from stepping in the same holes that you've been in. (Damn I just stepped in some more S*&^t... It never ends.) Life's certainly a learning process, I just wish that I wasn't such a slow learner!
I never smoked, drank socially in my twenties, and then again in my mid-thirties(divorce). I was diagnosed with HPV during my 1st marriage, and had some dysplasia on PAPs. I developed base of tongue/tonsillur cancer at 45 that was diagnosed after I developed a very swollen lymph node. My grandmother died from cervical cancer in her late thirties,my mother had cervical changes for years and later went on to develop lung, mets to brain, cancer. She died 6 weeks into treatment at 59. When the vacinne for HPV became available I had my 13 year old daughter get the series. I paid for it because insurance refused to pay, but considering our family history, I think it was money well spent. Sue Poling
Hello all,
I guess it is my time to add to this tread. I was the king smoker 1-2 packs a day for 35 years, smoked alot of pot and hardly ever drank (never really aquired a taste for it) but I have had my share of drinks in49 years just light and social. I quit cold turkey with the nicotine the day my ENT gave me my DX (sept.27 2005) so I have 1 year under my belt, I have had maybe 10 drinks in the last year and maybe 10 hits off of a joint since then. for the most part I eat way different and try to exercise more.I do know that it was the nicotine and nothing else that put me in this position. January 11 I will have one clean year, and I had the whole thing radiation, chemo, neck dissection, and even 39 HBO treatments . I must say I feel lucky as hell to be doing as well as I am this soon,even my doctors smile broadly when they see how well I am doing, never the less I am always looking over my shoulder, could I be this lucky, I hope so. A lot is in the mind and I have always believed that this was just a difficult path that I put myself on but i would see it through to the end. So far so good, I hope my luck holds out. Looking ahead to Jan 11.
You all are doing great, you are here and I am sure your perspective on things is different and for the most part better. Hang in there all of you, your spirit is astounding.
Lenny
Wow! What a great thread! I am really interested, since I don't fit into any pattern or risk factors, and my family has no cancer victims in our collective memory.
Question: How do I get tested for HPV? I am going to the gyn. next week, and I can ask him to do any test I wish. I will get a PAP test, as usual, even though I have had a hysterectomy and my cervix is gone. Is the HPV test a blood test? Please tell me what to ask for.
Thanks.
You won't have to worry about them knowing what to do since the test is done on the same pap smear (brush cytology) that they are already taking. While this is usually done on the cervix, my understanding is that they still collect cells from the surrounding area if you have had surgery. Given all the publicity that this is getting with the TV ad campaign about hpv ( they haven't even gotten into the issue of the vaccine on TV ads yet since the American public is so uniformed about hpv that they are going with 5 million in just hpv ads alone first) and lots of women are finally coming in asking about getting tested. When my wife had it done it was $50.00 extra for the test... but get this - the gyn tryed to talk her out of it, saying it wasn't necessary. 'Course that was before the vaccine was out there two years ago.
Brian, this topic is personally interesting to me, since I do not at this time feel that a cause for my OC has been determined. There is no reason to anticipate that I will have a positive HPV test, but if I do, what should be my next step? Is there any treatment at this point in my life (63 years old, 4 children, one OC surgery)? Is there an agency that would benefit from my submission of my test results?
Not at this tme. It is estimated that bewteen 60 and 80 % of the American population will have HPV in their lifetimes. How many will have the malignancy forming versions is unknown, and how many that have those versions will actually develop a malignancy, is also poorly understood. The question for you to figure out is; does your body have the ability to purge itself of the virus (on your subsiquent tests, are you virus free, if positive this time) and secondarily are you being reinfected routinely by your sexual partner ( If you go from free to infected to free etc. in a monogomous environment.) More than that there isn't much you can do, and there is no preventative measure such as condoms that will ensure that reinfection does not take place. Data is only being collected at a few places, and that is on people that develop malignancies right now.
HPV...There is no way around this question: How can a person contract HPV in a totally monogamous relationship? There is absolutely no question about other partners being involved. None. So, that issue aside, is there any other way a person could become infected?
My husband is a urologist who is scrupulous about cleanliness. Could he by any chance have picked up the virus in his practice in a non-sexual contact and passed it to me?
I haven't been tested yet, and I have no reason to believe that I have this virus, but I go to the gynecologist next week and could ask to be tested if there is a reason for it. AND.....if it will not cause relationship problems afterward. If I have HPV and do not have other causative factors for my OC, is it the current thinking that often HPV can be a cause?
All it takes to transfer hpv is epithelial cells rubbing against epithelial cells that contain the virus. This virus does not require a fluid transfer like AIDS of saliva or semen. You think of all the ways in which that can happen. Now given that it isn't transferred through a handshake, you have to consider the kinds of cells that it is attracted to. Here we are still discovering things, but clearly the moist squamous layer of the epithelium on all openings to the body, are prime places for it to reside. Perhaps some of you have read recently that Farah Fawcett has just been diagnosed with anal cancer. This is also a place that is lined with squamous cells, and she likely came to this cancer through HPV, since anal cancers are like oral cancers, predominantly SCC. Remember that it can be dormant in your body for years. That means unless you guys were virgins when you married, (not too many people these days) it could be from some relationship prior to you. It is not a new virus or a new problem. It is on people's radar now because of the vaccine, but it has been known of for half a century or more. But keep this in perspective, read what I said about how many people in the US are going to get HPV. It is very ubiquitous, it is everywhere, and an Australian team has found it associated with breast cancer. And out of over 100 versions there are only a handful that cause malignancies, and if you get one of those there is no guarantee that you will get a cancer, your immune system may eliminate it prior to that kind of event.
Just to add to the information. My brother was a smokeless tobacco user from the age of 2 years old (yes, 2 years old - my parents thought it was cute because he looked so much like our dad). He started drinking around 16 and I don't think he ever stopped. Probably 6-12 beers a day. Of course, my father blames it all on Agent Orange, which he himself was exposed to in Nam, but that's another story. My brother was not tested for HPV, but I've often wondered. Actually, he was a text book case. Everything they say can cause oral cancer, he did. Drinking, tobacco, hadn't been to the dentist in 12 years. He was a time bomb waiting to go off. I personally think genetics were involved as well since there are many others out there that do all the things he did and live to a ripe old age. I do strongly feel the HPV is something that needs to be looked into. I lost a cousin to cervical cancer about six months before my brother died. She was 41. It was right before all the information about HPV hit the press. She was otherwise healthy with no vises. Go figure.
Well, according to Dr. Gillison at Johns Hopkins (who is doing current research on human papilloma virus-16 and oral cancer and is on the OCF Board) -- Hopkins tests all the HNC patients for HPV and Dr. G. told us that 70% of their tumors test positive for HPV-16. Tha blew us away. An ENT surgeon at same institution said that his current patients are "over 50%" never-smokers and the percentage has been increasing in the last decade. It appears that smoking is not the primary cause of many new cases, perhaps not even a majority of them. The rate of never-smokers with oral cancer is far above the 8% that someone's doctor told them. I can't believe that Baltimore is a "hotbed" of HPV and the rest of the country is not!
Dr. Gillison has a paper in press on this changing demographic of oral cancer, she presented some of these data at a conference in May -- Brian has summarized these above. Our ENT (in private practice) says most of her new HNC patients are young (some in 20s) and non-smokers, and are presenting in the tonsil and base of tongue.
Hopkins will test tumor samples (even the path slides) from other institutions for HPV-16 -- however at this point it should be emphasized that it will not change one's treatment protocol (although response to treatment appears better and risk for recurrence less).
There is a new therapeutic vaccine for HPV-16 in clinical trial at Hopkins -- the trial for cervical cancer has been ongoing for over a year and the one for head and neck cancer has been ongoing for some months. My husband Barry is one of the participants. The vaccine is designed to stimulate the immune system to recognize and "clear" the virus, something which most people infected with the (ubiquitous) virus do, but for some reason some individuals do not. They may have perfectly adequate immune response to, say, influenza but not HPV. It is hoped that this increased immune response will, in turn, attack the HPV-containing cancer cells. Animal trials have been very encouraging but right now the human trial is only at the "what dose of vaccine will stimulate an immune response?" stage. It is far from being ready for clinical application. I have been posting occasional updates on the trial in the General Forum.
The current FDA-approved vaccine is a prophylactic vaccine designed to prevent infection. It would be a very good idea for boys and girls to be inoculated, perhaps more appreciation of the growing role of HPV in oral cancer will lead to this.
Gail
First of all, I would like to thank Gail Mac for writing to my husband and I sometime ago in response to a message I placed on the forum. I lost your reply before I could respond. Your message was very kind and encouraging to us both. My husband is a patient of Dr. Gillison's as well and has completed his treatment (35X radiation/cisplatin/tarceva) and will be having his neck dissection tomorrow with Dr. Tufano. His tonsil biopsy came back HPV positive and I would just like to "ditto" all that you said about HPV. I, myself, have been tested and am HPV negative. My GYN is very concerned about HPV and I took her a copy of Dr. Gillison's paper. She told me that she discusses the subject of HPV with her patients. She is hoping that in the next few years that the vaccine will be available to young men as well. I feel this subject is something that needs to be publicized more and I have discussed the subject with our dentist. I feel that dentists should be discussing this with their patients and I hope dentists become more concerned about checking people for oral cancer. Brochures should be out in their offices. I know you all were shocked when you got your diagnosis - having never smoked or drank and lived monagomously - and we shock people when we tell them about Rick's cancer and the HPV connection. Rick will be starting the same clinical trial with the HPV vaccine in the next couple of weeks. Would love to meet you and Barry sometime.
We have brochures for dentists, ENT