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suzanne98 #98330 06-28-2009 02:53 PM
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I am one of the youngsters who was diagnosed with OC. The only thing that my dr has noted in my records is that I had the Guarasil shot just a few months before I was diagnosed. After doing research on the shot, it can cause a 44% inrease of the likelyhood of developing cancer, in some women (as the FDA put it) I was a social smoker, very light drinker, and no HPV.



*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!



suzanne98 #98333 06-28-2009 03:00 PM
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HPV testing in the oral environment isn't generally doable except for suspect tissues that are being biopsied by punch or incision. Brush swabs in the oral environment are not the same as cervical swabs, the possible areas to collect from are too extensive to collect from with any certainty. The cervix is a very small area, and even that is a hit and miss blind brush cytology. There are some institutions that are working on a swish collection system but that hasn't been sorted out well enough to put into general practice yet. So you are asking for something that there is no manner to do accurately right now.

Without any conclusive evidence that cell phone transmissions cause cancer, I will just offer this observation. I think it is safe to say that everyone uses a cell phone these days, and given that, it is likely that 50% of oral cancer patients got their cancer on the side they used their phone on. This is of course has nothing to do with the cell phone, but with odds.


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.
Brian Hill #98353 06-28-2009 08:41 PM
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I was fairly young at diagnosis (34), however I was a smoker. HPV status is unknown in that the tumor was never tested. My thoughts are leading me to environmental causes, more specifically, fertilizers with pesitcides, herbicides and other harsh chemicals. I lived on an inland lake when I was diagnosed. I skied and wakeboarded alot and, since I was learning, swallowed alot of water. A friend of mine had a dog that was diagnosed with a sinus cancer after she sniffed a fertilizer pellet up her nose after he treated his lawn. It just got me thinking that all the run off in the lake is what I was ingesting when I swallowed water. And let me tell you, face planting was my specialty. laugh Needless to say, I have since decided to go green. I am battling clover, crab grass and grubs, but I am chemical free! My neighbors might not like it, but I feel better sending my 4 year old out to play knowing I dont use them. Anyway, JM2C's. Wondering what you guys might think.

Kelley


SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
Kelley F #98363 06-29-2009 03:55 AM
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For me I know there is a weak link in my genetic make-up...I accept that because it seems obvious being the 4th person diagnosed with H & N cancer...Three of us Out of the four had OC. Of the four one of us died of this disease. (Of course, I find all of this out after my diagnosis!)

Having said that...I believe because of my weak link I developed OC because of some irritation (environmental or not) or virus that hit my system just right.

I suppose we all can chock it up to BAD LUCK.

I just don't like seeing more and more and more young people diagnosed. This makes be believe it's environmental--assuming HPV is not involved.





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
Ray1971 #98364 06-29-2009 04:49 AM
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Yes we have had teens in this site with OC and the one girl from England was a real toughy. She whipped it like a lot did but with a lot of troubles doing it. But she is alive and well and a very sweet young lady.


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
EzJim #98370 06-29-2009 05:43 AM
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Suzanne,

The majority of HPV+ SCC's are located in the Orophyrnx region which includes the BOT and Tonsils but not the part of the tongue where your Primary was located so your chances that HPV was involved are low. That may be why your doctors were hesitant to do the the test. You can always pay for it yourself and then submit the bill to your ins co and see what happens. I was told 3 yrs ago it would cost $600 and I would think that cost may have come down by now?


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.
davidcpa #98386 06-29-2009 11:07 AM
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Ray1971 Offline OP
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Medical costs coming down?...

David, you have quite the sense of humor!



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
Ray1971 #98393 06-29-2009 02:04 PM
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Yea I knew as I was typing that it sounded absurd but I just thought maybe since they were hopefully testing more samples than they were 3 years ago and there were more testing facilities than 3 years ago, the cost might have come down.


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.
davidcpa #98411 06-29-2009 07:14 PM
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Like in my area, this year they have a great abundance of blueberries..so at this particular time blueberries are a great buy...


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
Ray1971 #98484 06-30-2009 06:06 PM
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LOL....that's what I was thinking...medical cost down? I thought for sure the FL sun is really effecting David. Poor thing, you need to head north. Alright, this is Serious Suzanne, I am part of an HPV study at Fox Chase Cancer Center and I should find out from that. Not sure how long that will take but at least I'll get an answer.

Thank you for that info David, I've had not heard that before, very interesting.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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