The St Petersburg Times is doing an article on me, oral cancer and HPV. As far as I know I will be the only patient featured in the article and I am set for the interview this Friday. I have told them that my HPV tests results are not finished but they still want to do the article. One of my clients forwarded my 2 client letters to the newspaper and they called me and one thing led to another. I tried to get this postponed until after tax season but I didn't press the issue because getting the word out about oral cancer is more important.

Since I just agreed to the interview yesterday I don't see much opportunity to read as much as I would want to so Brian, Gary and all you other knowledgeable people please post as many one liners as you can so I can try to get them in the article.

The St Petersburg Times is the most widely circulated newspaper in the Tampa, St Pete metro area.

Help me.

I understand that those of us that are HPV+ (my test is still outstanding) will be having fewer neck disections. I'm too late, but I also understand that the long term prognosis is better for HPV+ and I'm not too late for that news.

Rob J

Wow! That is so cool!! What a great opportunity to get the word out. You have helped so many of us with your experience and helpful information. I just know you will do terrific. The St. Petersburg TImes has a web site and surely they will put the article on line so we can all write letters to the editor and say what a great job you did. Thank you so much for all that you do for us.

How wonderful, David! My suggestion is how important oral check-ups are with a dentist/physician/self - anything curious...do not wait...once most of these ugly tumors show up the cancer is pretty advanced.....and that oral cancer is on the increase...and most importantly www.oralcancerfoundation.org!!
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Martha
CG to husband (age 56, HPV+)04/06- SCC Stage IV, left tonsil, 2 lymph nodes, 35XIMRT, 35X cisplatin/tarceva,neck dissection 11/06

I have a similar opportunity...and have been waiting until I can gather my thoughts a bit more...so I am glad to see this topic, though, of course there are many posts by Brian and Jerry, etc., that we can access.

I have been asked by friends and family, "What does this mean for the rest of us? What should we be doing?" Of course, all should have regular dental visits. One would presume that your dentist is doing a thorough oral exam and is trained to recognize problems. Not so with mine! He did NOT recognize this lesion and allowed it to remain in my mouth for far too long, costing me precious treatment time and requiring a more extensive surgery than if it had been caught earlier. So one piece of advice is to CHOOSE your dentist wisely. ASK if they do a cancer screening every time they see you. ASK if they have a Velscope device for screening, or if they are equipped and trained to do a brush cytology test of suspicious areas. If they don't seem well versed in this area, find someone else. I now go to a periodontist, who I feel gives me a better exam.

Also, I tell them that if they have ANY problem area that doesn't greatly improve within two weeks, they need to get it checked out. AND I tell them to insist on having a return appointment with the dental professional after that, to be sure that it has, indeed, improved after treatment. Many of these lesions are not painful and might be forgotten by the patient.

I tell them also that a lesion that has not healed after the above process should be biopsied to ascertain what is going on. Waiting any longer is only asking for trouble.

I tell them that if they do get a cancer diagnosis, to go first to a CCC for a full diagnosis and treatment plan by a team experienced in treating these difficult and dastardly tumors, and then to make haste to the OCF website to gain as much information and support as they can.

I tell them that if they smoke, they simply MUST stop, for a million reasons, and that if they smoke AND drink heavily, they are asking for trouble.

AND I tell them to get a small, bright flashlight and a couple of mirrors...one, like a shaving mirror, that can sit on a table, and a small one that will go into their mouth..like a purse-sized make-up mirror...and give themselves a visual exam often.

These are ALL things that a person can do for him/herself, and they cost absolutely nothing above the cost of the dental appointment.

One disadvantage to oral cancer is that there is very little publicity about it, so that the public doesn't know what to look for and how to respond. One advantage to oral cancer is that the mouth is accessible to us....we can look inside, and we can feel inside, and if we know a bit about what to look for, we can save our own lives!

Outstanding, David!!!
I'll e-mail you to get a fax number returned to me at work. I've got a great presentation with me by Gabe Calzada, M.D. titled:
Oropharyngeal Carcinoma: Younger Patients and Less Smoking.
Presented 05-11-2006
The HPV connection is presented and there are plenty of one liner sentences that you may find useful.

The one thing I would point out is oral cancer is being seen in patients who neither smoke or drink at a rather young age because of the HPV factor. Many of these people go undiagnosed because of age. NEVER ignore any symptoms in the head and neck region that do not go away in a couple of weeks. Then make an appointment at a major CCC center or see an ENT that has an oncology specialty to determine what it is.

Take care,
Eileen

And if the first opinion doesn't resolve it to your satisfaction, get a second and a third if needed.

Eileen

David,

Sounds great and I'm sure you will do well.

I suggest that your contact GailMac as she is our resident HPV authority.

This is her email address [email protected]

Good luck and I can't wait to read it. Please list the link when it is available.

Jerry.

David - Here's looking at you which I can probably do from my unit at Bacopa Bay across the bay from you in Gulfport. I'm a Snowbird from Philadelphia back to enjoying life again, playing poor golf, and trying to keep out of my wife's way! Good luck on the interview and I'll be watching the paper. Len