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Joined: Nov 2005
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It's not a real dream unless you occasionally indulge in it -- Remember, buying more tickets increases your odds so slightly that it just isn't worth it, but buying ONE ticket changes your odds from ZERO to SOMETHING and that's a big change.

BTW, it isn't cheap if there is no one else involved, just frugal! Frugal is when you don't go out to eat because the meals cost more because of the server tip -- Cheap is when you go out to eat but don't tip the server!


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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My brother swears mine was caused by my cell phone. He is an engineer and is very experienced and knowledgeable on things like microwaves, radiation, etc. I was talking on the phone quite a bit for several months before I was diagnosed with oral cancer. Sometimes I'd talk so long that the phone would heat up my hand and make my ear and face hot. I haven't smoked in over 20 years and I don't drink. Who knows, it could have been a combo of things. I was under an enormous amount of stress for several years, which lowers the body's immune system. Take that and add in the microwaves from the cell phone and ZAP! I was not tested for HPV, but I wouldn't be surprised if that weren't also a contributing factor. I hate it when I see people wearing those little "blue tooth" gadgets on their ear! If cell phones ARE contributing to head/neck cancer, then I sure wouldn't want to wear one of those things on my ear all the time. They are constantly emitting microwaves! Now I always use an ear bud wire and plug it into my cell phone so my head won't be up against the phone all the time.


Nine years out. New normal with limitations, but surviving and living life to the fullest.
Joined: Jul 2007
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I'd like to know how my 20 year old otherwise healthy son, who never smoked or chewed and almost never drank, got cancer. His HPV tests came back negative. The genetic information we provided was not suspicious either.

His doctors have said that because he developed this disease at such a young age, with no known risk factors, it is more likely that he will have a recurrence of SCC - or develop some other kind of cancer in his lifetime. That's scary. If I knew what caused the cancer, at least we could be on the lookout for certain strains of it.

Beyond that, I have a daughter too. If my son's cancer was caused by something in his environment -- then it's been in her environment as well. A month ago she had her first ever visit to a gynecologist along with her first ever PAP smear. It came back slightly abnormal. The doctor (at a clinic where she attends college) said it was nothing to worry about. They won't do anything but take another PAP a few months down the road.

That scares me too.

What if my son's cancer was caused by something that my daughter experienced too? Would the doctor's recommendation still be the same?

Not knowing is like waiting for the other shoe to drop - except that some days it feels like there are 10,000 shoes all hovering over my kids' heads.

Cancer sucks.

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I have been watching the number of these cases that come to this site for well over a year. When I first came here almost 3 years ago it was tough to get HPV discussed as I was the only one that wanted to warn people that tobacco and alcohol weren't the only ways to get SCC. I was also told at 58 I was a youngster. HPV Primaries kept to the Oropharynx region so it was a safe bet if you came here at age 50+, BOT or Tonsil primary, nonsmoker you were HPV related. Then we started to see young people with a tobacco history show up and now we're seeing young to middle aged showing up HPV- and without a tobacco history but the cancer appears everywhere tobacco related SCC shows up and it appears just as aggressive as tobacco related SCC.

I'm certainly not anything close to an expert but something seems to be a new cause of oral SCC. I have discussed this with my RO at Moffitt and he to confirms that Moffitt had started seeing these types but he can't (or won't) advance a theory.


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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I think we all know there is something else causing it also. Remember I was told my cancer was unique and got no further explanation.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Posts: 346
You know this is very interesting. I have always thought that my
"experience" was caused more by stress than anything else. I did
smoke, but I experienced a horrific 1 1/2 years of stress from my son's so called girlfriend and the "made up" baby she had and moved
4 states away. Well, I took it so bad, and now I know she just pushed all our buttons for money.
I truly think that that stress did me in. Now, I just walk away and
go to another world when stress tries to get me. I will not ever
take it again.
I think you guys are on to something for sure.
I too was told that my particular cancer was very rare.
Then, I had a skin cancer removed from above me knee. (Nothing
serious at all) except now I am scared of the sun, and still know
I need the Vitamin D from it.
Let's keep on going and thinking. I say a prayer that I do not have a "goner" feeling for right now. I hope I can continue, but
we none of us know exactly what is going on with our bodies and minds.
Take care all,
Debbie
the


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
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I have had 3 totally unrelated cancers with no known genetic or causative factors. I was diagnosed with the begining of glaucoma and was able to start treatment before damage was done because of an eye exam with a then very new comuputerized test. My husband had colon cancer with sucessful surgery. These were all caught early by medical exams and testing.

We must realize that although there are well established causes for many cancers there are many unknown factors as well. The best thing we can do is to make others aware of the necessity of taking necessary steps for prevention and detection, to be aware of any unusual symptoms, and to have all medical exams which are approprate for one's age, gender, genetic facors, race, work environment, etc.

We can support the work of OCF in raising awareness and detection of oral cancer by organizing and participating in events, passing out literature to doctors, dentists and in medical areas, wearing our buttons and tee shirts, carrying the OCF bag, buying and using the beautiful note cards, speaking to people and DONATING to OCF.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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I think enviormental factors might have a factor in many cancer cases and health disorders in general.Sometimes I wonder about all the dentistry I had. I had cavities at a pretty young age and I remember they put all sort of chemicals to fill them so who knows....



Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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