Just wondering if those diagnosed with OC are categorized within any specified groups, such as, age, smoker, non-smoker, drinker ect...ect...

It seems like a lot of the "newbies" on this site are on the young side...Not to mention everyone that helped out with the Bethlehem, Pa walk of 2009 in the Lehigh Valley that not one person fit the typical profile and yes if I am not mistaken everyone on that board was HPV negative--concerning OC.

What are the current stats?

Are they parallel to what we are seeing on this site?

And pretty....I was pretty! Sorry Ray, lost it for a second. I'm with you and David, lot's of youngins that don't fit the regular profile.

Ray,

My understanding is that the younger victims of OC are more likely to be HPV positive and will therefore have locations of the their primary tumor in the oropharynx, base of tongue or tonsil area.

However, not all tumors in these areas are HPV positive. Since tobacco is the cuprit in around 65% of oral cancer cases and with less people using tobacco each year, the increase in the number of cases every year is coming from the HPV factor. I think it is safe to say that most younger OC patients have not smoked or chewed long enough to get OC from tobacco.

Remember that there are around 5% of those with OC (like me) that have no risk factors and no cause can be found.

I'm sure that David and Brian will chime in here and correct me if I am misquoting any facts or figures.

Jerry

Jerry,

It strikes me that the younger people (in their 20's or early 30's) that I am seeing here generally don't have cancer in the oropharynx area.

Even if they were part of the 5% w/ no risk factors or part of the HPV+ group, why does it seem like there are significantly more younger people here than 2 years ago when I joined? Or, am I imaging this?

I remember a post that said David had recently where he indicated that OC was rare for someone of his age when he joined...and, Dan was told by his team he was young for it too. But now we are seeing people half their ages coming here.

I wish there was an answer because I hate to see this cancer targeting a larger audience year by year.

I know what you're saying Jerry. But, almost everybody involved with the OC walk in the Lehigh Valley would fall into that same category as you and I...I'm not talking about one or two people,and with conjunction of the people I'm seeing here it seems to me (as a basic-average-Joe-observer) that that 5% group of unknowns is "growing"


I don't think this is a good thing here...I remember in another discussion that an "unknown strain" of HPV was the culprit and I was thinking the same thing..But I believe that Brian squashed that pretty quick with hard facts...


I am also seeing a lot more younger people with other kinds of cancers...Specifically Lymphoma type cancers...Maybe people have been living wrong for so many years and it's finally caught up to us. The world as a whole...not us individually.


If it's not viral then it has to be environmental...

On a lighter note...my puppy Manny starts puppy class this Thursday...and he needs it!

BTW, I brought this up to my family doctor and I told him about all the people that basically fall into my group of "unknowns" and he said there is a culprit somewhere...whether it's microwaving food in plastic, cell phones or viral but there has to be a connection somehow...Okay, I'm paraphrasing here..when he said it he sounded a lot smarter!...LOL...

I had SCC of the tongue the Radiation Oncologist (who saved me) said, 3 things could have caused this viral infection, trauma to the area or smoking. He's a recent grad from Harvard Medical School and they have been doing a lot of research on Oral Cancer. I had a major viral infection in January, I had a tooth pulled in the area of the cancer and I was a smoker, I say take your pick. I have also read where they are leaning towards cell phones. I use mine all the time and I use it on the side I had cancer. When using my cell phone I noticed after talking on it for a period of time I would have a red blotch on the side of my face same area as the cancer.

I really don't know how this happened to me I'm very heathy take no meds I would like some answers why.

I'm not a youngin' just thought I would comment this has been bothering me since it happened.

Connie

Jerry and others,

Only someone like Brian who deals with this stuff at the highest level day in and day out might be able to fully address this question but like Margaret said when I was Dx'ed 3 years ago Moffitt told me I was a youngster to have OC. The vast majority were tobacco users and apparently older than me. When I forced my issue with Moffitt and found out I was HPV+ it opened up a whole new world for me to explore. Shortly after this results of some studies confirmed that there were more OC people like me and my birth year, 1948, was mentioned as some benchmark meaning if you were born before 1948 and you had SCC you were more likely to have it because of tobacco and if you were born in 1948 or later you were more likely to be HPV+.

So this site seemed to mirror that as we began to see more people test positive (or at least have the traits) for HPV and less from tobacco. It was like you either were a tobacco user or you tested positive for HPV. We did see a few youngsters come here with OC but they were chewers. Then about a year ago, maybe more, I started to see a new group come here. They were in their 30's/40's, non smokers, Primaries NOT in the area where HPV seemed to start and they tested negative for HPV. I shook my head as if someone must have screwed the HPV test up. But more and more came with exactly the same traits. I have had more than one conversation with my docs at Moffitt and they all say they are seeing the same thing but the closest I got to an explanation was "maybe it's a new strain of HPV". I haven't read anything that has discussed this either.

Again, maybe Brian can put me on the right path. There has to be either some common link that at least I can't see or there is a new and distinct cause for SCC in the OC and I hope researchers pin point it because this is not a cancer treatment that is friendly to people living 50 years with the side effects.

These new anterior of the mouth tongue cancers are NOT from a new strain of HPV since they are testing them for that, and the highly accurate test is finding them negative for HPV period, regardless of sub-typing. The current line of thinking is a genetic commonality in these patients that allows them to be vulnerable to this malignancy, and tomorrow I will pull out the research articles that identify the gene for you. However, this is really not very helpful. What are we going to do, a 600 dollar genetic profile on 300 million (current US population) people to determine who might have the gene? To find perhaps 10,000 people that MAY develop a cancer from it? This is not practical or financially doable, and another approach (if this really is the issue) needs to be found. This is where conventional early detection screening to find the earliest transformations as carcinoma in situ's is very important. AGAIN, the dental and ENT community need to do what is not being done. OPPORTUNISTICALLY screen every patient that walks into their office.

Connie,

Not to sound like a smarta$$, but the red mark on your face would be the pressure you're putting against your face while talking on the cell phone--it happened to me too.

Remember that some cell phones put out a little more radiation then others and all cell phones run a little hotter (more radiation) when roaming. They say that cell phones' radiation is not enough to harm anyone...Well, my cancer was on the side I use to place my phone...I use a wired headset now--just in case!


David,

I think if it was another strain of HPV it would show in the reports...

It's something!! A 13 or 14 year old boy in my area was diagnosed with OC sometime last spring...

And I am surrounded by very healthy people coming down with thyroid and lymphoma type cancers! I'm talking about very athletic people who don't smoke and drink very little...I am perplexed with a lot of things...Oh...and a lot of my friends animals are coming down with these same cancers. My GF's mother's cat died of..get this...some kind of salivary gland cancer...


Brian,

I just saw your post...Being the 4th person in my family with H & N cancer (all being of Stofko blood) I am going to say that I have a weak link in my genetic makeup...I am going to be sure to pass this on to my siblings.

My cancer is on the side I used my cell phone too. Do you think the blue tooth (hands free) helps?

With all this talk of HPV NOBODY has been willing to test me for it. My doc at Penn (who I no longer see) wouldn't do it. My oral surgeon said they don't do it, my family doc said they don't but swabbed me anyway. I did join a study that is being done at Fox Chase but I still have not heard anything. Has anyone else heard of someone having so much trouble with this?