hi guys
not having been on the forums for long i apologise if this has been done elsewere, but if not...

as most of you probably did, i wondered what caused cancer to develop in my tongue.

all the research i checked suggested that the bulk of those who get hit hit with this type of cancer are pack-a-day smokers who probably enjoy a little too much alcohol also. And, they're likely to have been doing this for 30+ years.

there is a small group of people (though growing), who don't fit this demographic. I've noticed on this forum that many of your signatures mention the fact that you were non-smoking healthy living people when you got this cancer.

same as me. my late teenage and early 20's involved some "smoking" but according to my surgeon not enough to def be a causal factor. Ever since i can remember i have played sport. for the last 8 years or so (i'm now 32) i have surfed and played soccer regularly. When the soccer season ends each year i sign up for indoor soccer to keep fit. i cycle and swim, and generally walk instead of driving where i can. my life is stress free (genuinely!), i work 4 days a week in a job i love, and spend the extra day off working on making music - my other passion.

so you probably get the picture im trying to paint.

im really curious to find out what, if anything, might link those of us who were generally healthy living people before we got oral cancer.

any thoughts?!

I am also 32, but I never smoked a cigarette in my life. When I was first diagnose I asked those same questions, but now I am to the point that i just want it gone. When I ask my Drs about it all they can tell me is that it is probably in my genetic make-up. They really have no answers at all.

Jon,
I'm not going to be able to help you, but am sure others will be able to shed some light for you.

I do know that you may want to see if you were tested for HPV when you were biopsied (if you were). I have heard of some speculation about certain chemical and fungi exposures, but don't have specifics. I do know I keep hearing "there's a new face on head and neck cancers". No longer the bane of old men who were lifelong smokers and heavy drinkers; it's striking both sexes and "healthy" non-smokers.

I would love to know why/how this happens to us. If we could pinpoint "blame", we could maybe avoid reoccurance, and others could avoid being in our shoes.

Good luck, good health, Jon

- Pam

Jon, I second Pam. Sounds very likely that your cancer, like mine, was caused by HPV. There are a number of very good research papers on the page she linked you to. I found them illuminating, and reassuring.... as evidence seems to point to those of us with HPV-caused disease having a much better outcome than the traditional smoking route.

Keep us posted on your progress!
David 2

Hi, Jon -

There seems to be no link.

I don't fit the parameters, either: I'm female, haven't smoked since 1979 and have an occasional drink a couple times a month. I've been what I call a semi-vegetarian since the 70s - red meat fewer than a dozen times a year.

A link? Well, you & I and others can't point to the known culprits - smoking & drinking & HPV, for example. That leaves us with those burning questions: why and are we missing something.
An oncologist from Yale said that only a total plant-based diet - along with eliminating dairy, most fats, carbs & refined or processed foods - has shown any effect on preventing cancer. So, did I have one drink or hamburger too many? Did I drink too much milk or eat too much cheese? Did you? Is it our family history? Is it because we both enjoy our work? Is that what we have in common? What factor or combination of factors, if any, triggered the mutations in our mouths? I wish I had the answer, and I don't know if science will be able to decipher the entire cancer mystery in my lifetime.

If we knew what caused our cancer and it fit a statistical profile, we might have something to sink whatever teeth we have left in our mouth into. But for some of us, we're it. There's nothing else. My cancer was not typical OC, so maybe I'm the odd one. Who knows?

I teach memoir writing and tell my students that they may have a 600,000-to-one chance of being hit by lightning, but if you're the one that's hit, it becomes 100 percent.

So it is with some of us. Unless someone comes up with an answer.

In the meantime, enjoy a speedy and uneventful recovery.

Peace,
Marlene

I'm now 30 but I was 27 when I was diagnosed. I wanted to know so badly "why me" but realized I probably will never know. Like Angelia said....I just want it gone and to stay gone.

I see your pathology was clear...what are your plans now? Will you go every 2 months?

Ive never been one to get caught up with the "why me" phase. From the very first time I heard those dreaded words, my response was what do I need to do to get better?

Please try to focus on getting yourself well. Where it came from will not change the treatment plan at all.

Best of luck with everything.

I totally agree with Christine, not one time have I said why me or felt any self pity. I figure it was me because I can handle it better than someone else might. I have a unique cancer is all I was ever told by a few Drs and a couple of Hospitals, so my job is to beat it and be fine one day. You go for the same and keep a good mind set at all times. Listen to Christine, she is a wise lady with good thought processes.

thanks guys..
for the record, the "why me" was never one of self pity. i took the news on the chin and stayed as positive as possible (very positive!) until the surgery and clear pathology.

but, having worked and studied all my life in science i cant help but ask questions when something doesnt fit a pattern. everything is connected, something i have done (or had done to me) over the last twenty years (?) set off one cell...it didnt just happen because i can deal with it (in my opinion, though i respect Jim your thoughts that that may be why you were randomly selected).

i lost my dad to cancer when i was 10, so wondered if grief may be at the core.

could it be toothpaste, mobile phones, a plant i worked at, a favourite corn chip i've overindulged in?

i agree treatment is the most important aspect for me now (recovery from at least), however treating a disease and not addressing the cause has been a recurring failure in modern medicine.

anyway, just curious on people's thoughts and whether there has been any investigation into the patterns that connect the non-smoking lightning bolts among us.

ps - im full vego (9 years)...so maybe Marlene it was that one drink or vege-burger too many...

peace
jp

Having admitted to being a heavy smoker I seem to be in a minority on this board. I think I do have the advantage of not questioning " why me" I quit smoking but not living. I was never one to try and live a safe life. I was a big wave surfer when I lived in California and almost died in a few big storms. I have spent the past 16 years working in tropical forests in some of the remotest areas in the world. I have had multiple bouts of malaria, typhoid, typhus and diseases even my doctors couldn't diagnose. I am very familiar with the intensive care unit at numerous hospitals. I own an ultralight airplane that I fly every day I can when the weather here is warm (I had my engine die on me during treatment and crash landed in a preachers back yard). I have had so many close calls with death that I wake up every day in wonder that god has granted me another 24 hours.

I read about bucket lists and I think; I don't have one. When I was diagnosed, my only thought was to stay at home with my wife and son.

I'm better now and have to start planning another exploration program in the Amazon next month. I'm going to a place so remote, the maps are blank and the rivers have never been named. Funny thing is I always loved that sort of thing. Now that I have survived this far against the cancer, I really just want to stay home, not because it�s safe, but because it�s where my family is.

I�ve seen old men who never really lived a day in their lives and buried young men who lived more in their short lives then most other people do in long ones. The one thing I never was good at or spent much time thinking about was why good or bad things happened to me. Life is just a collection of good and bad things and a bunch of stuff in between those extremes. Eventually we all have the ultimate bad day, our last. Until then I�m living forward and not looking back

Kelly