In the next 24 hours I need to get an email from anyone that is/was a oral cancer patient with no history of tobacco use. Please indicate if you were tested for HPV at the time of biopsy or tumor surgery, or if your "assumption" is that you had an HPV related cancer because you had none of the historic risk factors. If you came to your disease via tobacco, the show can't use you. (I have another opportunity still in progress/talks with a different show for that story) I need phone number contacts, and one paragraph about your experience, and current status (In treatment, in remission, newly diagnosed, etc.) I am going to forward your emails to the producer at 20/20 for a show that will be done in the next 30 days. He will call everyone and decide who he would like to have appear on the show. It will explore in the story, viruses, transmission mechanisms like oral sex, and will include Dr. Gillison as one of the personalities. Your 15 minutes of fame, and the opportunity to help the oral cancer cause await you!!!

Brian, I smoked for about 10 years andn then did not smoke at all for 37 years before my cancer was discovered. My doctor wants to believe that smoking caused my SCC, since he felt that smoking as the cause offered a better prognosis than a genetic cause.

Should I write? I am sort of a mixed case, I guess, since I DID smoke at one time. Perhaps a clarification on this: If a person EVER smoked, will that be interpreted as the cause of their OC?

a decade of smoking takes you out of the group, thanks for offering, but they want never smokers... Smoking has health issues that exist decades after cessation.

I'll be watching for the smokers turn, after the many years of smoking I did until this OC kicked my butt. I was very much a ladies man too, Neither are to be bragged about but put in bad memories.

Brian,

I smoked in high school for about 5 years. I was a light smoker, about a pack a week and I tested positive for HPV 16 42 years later.

Briain,
I assume you have contacted GailMac for this. I don't think her husband was also a smoker.

Take care,
Eileen

My husband Stephen has never smoked and was HPV 16 positive. Let us know if we can contribute in any way.
Kerry

Sorry I will write it in a paragraph I didnt read it very carefully....to follow

Brian,

My husband Stephen was 47 when he was diagnosed, exactly two years ago February 28th, with Stage 4 tongue cancer. He has never smoked and drinks very little alcohol. His Doctor told us that he had a virus calles HPV 16 that caused his cancer. We had no idea what this was were a little shocked after doing some searching online about what this exactly meant. He lived through a year of hell with his family and friends by his side and has been in remission for what will be two years in May. To this day he has a hard time swallowing and his eating is very limited. He will also suffer with no saliva for the rest of his life, but we are just glad he is alive.
Thank-you
Kerry Martin
978-668-5555
[email protected]

Hi Brian,

I was diagnosed with tongue cancer in 7-07.( T1 NOMO). I had surgery and no other treatment so far. Im 38 years old with no history of tabacco or alcohol use. The doctors do suspect that I have HPV and currently will get a test to confirm.
Thanks Glenn Hartenstein 251-621-0739

Brian,
I did smoke some in college (usually not cigarettes)but that was over 30 years ago. I don't know if I have the HPV virus and when I went in for blood work this last week I asked about it. They said for $1500.00 I could find out. I am checking with my insurance to see if they will cover the test.

Any blood serum test for HPV which will likely be a PCR (polymerase chain reaction) test is useless to you. All it MIGHT show is that you have developed an antibody to HPV. Where (anatomically) and when that infection took place, or if it has persisted will not be revealed to you via this kind of testing. OCF is currently working with a company on the development of an intra oral test that could be used to screen for the virus, but that is at least 1-2 years from a commercially available test. Anyway, the insurance company isn't going to cover this since it is not predictive of anything.

Please do not put your phone numbers on a public forum like this. I asked if people would please email me the information and I would forward it to 20/20. If you do this before I leave to lecture at the University of Illinois on Monday afternoon I think there is still time to forward it to 20/20.

By the by I did not contact Gail... she is out of the country.

Brian

I am a little late in responding ..BUt I never smoked ..ok I tried it when I was 18 but I never finished the pack. They have No idea why I have contracted this .. They have told me that I am very young ..one of if not the youngest in my area.

They do not believe it to be HPV related. I had a partail Glossectomy and ND and have been cancer free at this point for excatly one year ago yesterday ... a Young 35 year old mom of 5 children ..Only 4 more years to go ...until the risk factor goes down !!

This past week I was contacted by the producer from 20/20 and we had a nice, short discussion. Although I don't fit the profile of who he is looking for, I assured him that my experiences and activities of getting the word out about early detection, would be a positive for the show. He was very gracious and told me that he would get back to me if he decided to use me for the piece. I am looking forward to the possibility that that I may be included. However, I am sure that this widely watched show will be very helpful in getting Oral Cancer the national exposure that it so desperately needs, whether I am on it or not.

On a smaller scale, this coming Tuesday, the local CBS affiliate is sending a producer and camera man to my office to do a segment on the VELscope and early detection. I am hoping that this piece gets a better time slot and more local exposure than the one that ABC aired in December.

Jerry