I was flipping channels this morning (Oct. 15) and happened upon the long-awaited "Good Morning America" report on the link between oral cancer and HPV. For those of you in time zones where the show has not yet aired, it's on in the 7:30 half hour (I tuned in around 7:45 and the report appeared to be about two-thirds of the way done). It was followed by a brief discussion between Diane Sawyer and ABC's medical editor, Dr. Tim Johnson.
There's also
a story on the GMA website, along with a box for comments.
No video of the segment yet (it's 8:02 a.m. as I type this) but I am sure that is coming. As of about 9:30 a.m., the video has been posted with the story.
Thanks for the info Leslie. Im sorry I missed it, hope to see it on video.
Thanks for the heads up. I'll wait & see if they post the video later on today or tomorrow.
I heard this advertised on TV around 7:00Pm last night. Unfortunately I still can't post from home so had no way to tell anyone. Actually, if I'd been thinking last night I should have emailed Jerry. Oh well.
Take care,
Eileen
The good news is not only did our patient come across well, but ABC actually got the story right. Of course hooking them up with doctor Gilllison at Hopkins ensured that the facts would be right. The only down side was that after all the work I/OCF did to prep them, get them the right people and more over the last 7 months, OCF didn't get a mention as a source for additional info. (Thank you very much.) But bottom line we got an important story out there, with good information, in a way that did not sensationalize the oral sex aspect of the story line.
I think that I have pretty much lost all faith in the average American. The woman on the McCain town hall meeting that thought Obama was an Arab, and the rest of the political manipulations, misrepresentations that have been believed and restated as gospel, had me convinced that some people should not vote because they are incompetent to make any good decision (Republican or Democrat) or they are one issue voters who have had their buttons pushed by some hot topic, like gay marriage or whatever (that's how we ended up with 4 additional years of a disastrous W administration). Sorry this forum is not supposed to be political. But reading some of the idiots that have posted to the ABC comments after seeing the story or reading the article on HPV and oral cancer, convinces me that far too many Americans are not just ignorant, they are downright stupid and must be from the shallow end of the gene pool. Idiots. Please note these reflect my own opinions and do not represent ideas and positions of OCF.
Wow!!!!! Brian you are absolutely correct about the comments. Not only do those posters have no idea at all about what a serious deadly disease OC is, but they also completely missed the opportunity to actually learn how to idetify if they have a problem. Its actually very sad to know that so many innocent people out there are too stubborn and ignorant to try to understand the information they have been given. It could one day save their lives or someone they love but their thought process completly missed the boat.
Parts of that report have just aired on one of our evening news programs (channel 9) here in Australia. Hopefully some of the other main channels will also cover it.
Sadly oral cancer awareness in this country is just about non existent it gets very little coverage in the media.
Karen
I guess that's what happens when you are strained thru a sheet and you barin cells get in between the threads. Good job on this one Brian as usual.
[quote=Brian Hill] But reading some of the idiots that have posted to the ABC comments after seeing the story or reading the article on HPV and oral cancer, convinces me that far too many Americans are not just ignorant, they are downright stupid and must be from the shallow end of the gene pool. Idiots. Please note these reflect my own opinions and do not represent ideas and positions of OCF. [/quote]
I couldn't agree more...... sad
I'm all in favor of getting OC HPV displayed on the global scene even if some of the facts were slanted. It's a shame that a piece like that couldn't have been entirely scripted by Dr Gillison and or Brian and it's a shame after all that Brian did this site didn't even get so much as a whisper but it's a global start and a huge accomplishment. I have been pounding the payment for 2 years now and I haven't been able to get OC HPV outside of Tampa Bay so I applaud Brian for all his efforts.
I second David's commendation of Brian and felt that the TV show very good in debunking the anti HPV vaccine propaganda. However, I did get the distinct feeling that some of the commentators would equate OC patients with a leper. But then again many of the posters on line forums that mention sex or religion are living in their own nasty little world.
And you should all be glad that my smiling visage was not shown on nationwide TV as the "new face of Oral cancer". That would be more of setback to OCF than not getting credit on this tv spot.
The final edit did not come off as bad I was afraid it might. I agree that many people are missing the point. It's not up to me WHAT the general public does with the information, but it is important to me that they get the information. Do what you will with it, but at least you are armed with all the facts. If I had this information in 2005, I could have been spared at least the chemo, I think.
I wish GMA had gotten the little facts straight---like the "6 months of grueling chemo" I had. I had three rounds of cisplatin, 2 months+radiation. It's not that hard to get that kind of stuff straight.
Teresa
I think you did an excellent job and came off very well on TV. You certainly did a lot to get the message out about HPV and OC. I was wondering about that 6 months thing in the video because I had seen some of your earlier posts and signature.
BTW: this certainly should count as a "special" occasion to have a little toast (and not that rye bread stuck in your throat type - funny journal entry). I just finished my one year app't (actually 11 months) with the Radiologist who pronounced my tongue "boringly normal". I did notice one of your posts on alcohol. On his advice, I have been having a beer a day with no adverse effects noticeable so far.
THANKS AGAIN for putting a nice public face on us OC folk.
Charm---I'm glad you liked the segment. It wasn't easy to make the decision to go ahead with it. Loved your toast joke! yes, the rye bread incident was truly frightening--for about 2 hours, then became ridiculouly funny. I probably have 2 glasses of wine a month--I want to 'live' my life, too!
Congrats on being 'boringly normal'.
Good job Teresa
Bottom line, "our" patient (OCF family member) did a excellent job. The story got on the air, the show has huge viewership, and the facts that they didn't get right don't change the message. I would have liked for them to distinguish between just talking about HPV (120 versions) and the 8 that we know to be oncogenic / cancer causing. Clearly this point wasn't made as many of the people that posted talked about warts, and genital warts are caused by a version of HPV that does not cause cancer. But it was a worthy effort, and some of the basic ideas and issues did hit the street. Now we look for the next big venue to tell the story again. I have done a bunch of these, and they never, after cutting, get the story just right..... we just have to keep on trying.
Teresa,
Welcome to show biz. You did a great job and as much as we would like when we do TV spots, we have no control over what they show. All in all it was very well done piece and just like in my TV appearances, I had no luck getting the OCF a plug.
I have seen a tremendous increase in the exposure that Oral Cancer is getting in the media, in the 3+ years since I got involved with it. There is also a great deal more being written in the dental journals that I read.
It's people like you, who are willing to tell their stories to the public, that are most important to out goal of getting the word out.
Thank you so much for what you have done.
Jerry
Teresa,
Was that you??
You did SUPER. I have done a ton of TV and public speaking and I know how tough it can be to come off in a natural way and you did it like a pro. Wouldn't be surprised if you get a few offers out there. I will probably get to say one day, "I knew her when..." LOL
Yes, it was me, and thank you. I have had an offer already.
See I told you I was going to be able to say I knew her when. Guess we need an autograph session just for OCF members?
Teresa:
I hope you get lots more offers
Thank you for what you did. I appreciate you putting yourself out there as the patient. It took guts and courage to be the face of oral cancer. I, for one appreciate what you have done.
When I saw the stupid ignorant comments people had posted that completely overshadowed what you had done. Im sorry.
You came across as a young, attractive, intelligent woman. Very well done.
Thanks again
Teresa,
Thank you for going national. You did a beautiful job. Even if the spin was a little off and some people were really off in their comments you made a positive impact.
Great job T
If you cant tell... we're all very proud of ya !!
Kevin
Thank you, Kevin and Malka
Great job Teresa! You seemed a natural on air. Thank for sharing your story with the �world� � it took a lot of courage to do what you did.
I didn�t know much about oral cancer before I was diagnosed. I thought it was a disease of older men who smoked and drank a lot. How wrong I was! Hopefully this show will bring the message that it can happen to anyone at any age, and encourage people to heed the warning signs.
I wish you continued good health!!
Wow, I posted the ABCnews story on the HPVSupport forum. It concerns me that there are people on their boards that say oral disease from HPV is so rare, that only people with immune disorders like HIV have to worry about it. That's just crazy and I want so much for people to know they should disclose their diagnosis to their dentist or family doctor....so they can keep an eye on them. Anyway, I'm sad to say that the moderator deleted my link to the ABC story. They don't want to "scare" people.
ChristineB, Susan, SABW, thank you. It was not an easy thing for a 'prude' like me to do.
I just finished an extensive taping for "The Doctors" which should be more clinical and in-depth, and less sensationalistic.
I come across as healthy and well, and yes I did tolerate treatment far better than most, but be assured that I tried to emphasize that there are people out there truly SUFFERING from not only this disease, but the permanent side effects that are lifelong. It's not over once you are in remission, this treatment stays with you.
Thank you for updating your newest project. Very nice of you to put yourself out there for people to look to. Please let us know when this will be out, I know sometimes there can be quite a lag time on these things.
You are absolutely correct with the long lasting effects. Im one of the ones who suffer from some of those issues like trismus which isnt fun. I also know Im also a lucky one, many suffer far worse senerios than that. Its the positive outlook which needs to stay with you alot more than any lingering side effect does.
Thanks again, we are proud of what you do
What is the Doctors? Is that that show I've seen advertised with 4 doctors on the screen? I believe it's a daytime show. I don't get out much.
Yes,
"The Doctors" is a new syndicated show on medical issues. Here in DC it's on in the late afternoon, just before the local news. It features four physicians, each from a different specialty, and is a spinoff of the "Dr. Phil" show.
(An aside: A couple of years ago,
one of "The Doctors" was the bachelor on ABC's "The Bachelor.")
Sounds interesting. Hope its going to get some good info out to the public, I know Teresa will do her best to see to that.
Between Dr Phil and the Bachelor it should have quite a following
Teresa,
Let us know when it's going to air, if you can.
Teresa,
Please let us know when your "Doctors" episode will be airing.
Keep up the good work.
Jerry
I have spent two hours in the last couple of days with two producers from The Doctors, giving them background information on the disease, incidence rates, causes, HPV, etc. etc. They have their own staff, talking head dentist, who is going to be doing the TV segment, not an oral cancer expert, nor someone out of research, or cancer treatment, like the oral oncologists I gave them to call, and I am not allowed to talk to him. All we can do at this stage is hope that with all the backgrounder, and a smart patient, that they get the story right. Who knows what their dentist will say.....
http://www.thedoctorstv.com/
Brian,
I just sent off an email to them (the doctors) and offered my input.
I'll keep you posted if I hear from them.
Jerry
Not to put myself in the same league as Brain, but I too hold my breath after taping and before it's aired. You can never trust editing to convey what you really wanted to say, especially when they interview you for hours and the air time is cut to minutes and only once was I given a chance to comment on what was going to be printed.
Many of these interviewers and/or editors already have a story line mapped out. I know a young artist who was trapped here after Hurricane Katrina, was rescued and made it back to New York. She was interviewed for several hours for the NY Times but the interview was not used because "she was too upbeat about her experience."
The local paper was going to do a feature on an unusual wedding for the Living Section. My friend allowed a reporter and photographer to interview family members,observe much of the preparations and attend the associated events and the wedding. She gave them detailed information about the associated laws and customs. The only request she made was that she and her husband be allowed to review anything that was being published so that they coudl be sure that the information was accurate. This was allowed but the article was killed by an editor who did not accept their request to delete a reporter's untrue explantion of something she observed.
I am leaving for LA in a few minutes. Wish me luck---I will try to be a 'smart patient'. Historically, I am not known for my 'smarts', and do not claim to be an expert on HPV, but if my being in the public eye make people stop and look and want to know more, my job is done.
Thanks for your support, I will try not to disappoint.
Good Luck Teresa.
Does "break a leg" work for this situation? I know you'll do a great job.
Jerry
I'm sure you'll do fine. If not, we'll ridicule you for a while.
Okay, I'm back, and a little disappointed. Um, a lot disappointed. Not supposed to discuss until it airs.......
Voy, that was fast, glad you are back already. Hope all went well. When can you let us in on the facts? Will this be airing anytime soon?
It's all about what the producer "thinks" will get the highest ratings. It's not about public information or education. You need to be proud of your efforts and keep pounding away. Please don't let any opportunity slip away just because you come in contact with idiots. Might as well become a recluse if you want to avoid them.
Should be airing Friday, Oct.31.
Teresa
Thats pretty quick. Thanks, I will look for it. No matter how it turns out, you did good. You tried your best, your effort is commendable, thank you.
Teresa, Please give me a call on Tuesday to update me on the questions asked and your concerns. You have my cell phone number. Thanks.
The Doctors segment is on in CA at 11 AM on KCAL channel 9. It will be on the show in other time zones also. Please check your listings for Friday AM if you are interested in seeing it. I may have a word document that I can send to people who ask me for it by email tomorrow that has national channels and listings, but you can likely get the same information from their web site for your own community.
Teresa,
I'll be setting my TIVO. Don't be too disapponted if it doesn't air as scheduled. I was bounced around for at least a month and a half once.
Jerry
Brian,
I found the show on at 3:00 pm here in Central FL on CBS, but the show description says "An allergist describes the latest methods of testing and treatment, near-death experiences."
I'm glad you wrote this post because I had scheduled my TV programming for that show and it would have been the wrong one. I guess I'll try going back on the site and look for our subject on another day.
Lani
Brian,
Just checked. The "Doctors" web site says 10/31. And their schedule on the web site matches what my cable TV info says for each day Mon thru Thurs. But then Friday per the web site is the HPV/OC show, but the cable TV info for Friday says as I stated above.
Maybe my cable company info is wrong - been known to be. Or maybe we're being censured - been known to happen. Sometimes the local stations just don't show a nationwide show because they don't want to.
So I'll watch the show On Friday at 3:00 pm and we'll see, I guess.
Lani
My TiVo information for Friday shows the same thing that Lani posted -- allergist and near-death experiences -- plus tummy tucks (woo hoo!).
It may be that those topics comprised the program that was originally planned for that hour -- but that when the GMA segment appeared, the producers of "The Doctors" jumped on a hot topic (oral sex! oral cancer!) and put something together but didn't send out changes for the cable/TiVo guides. It sounds from what Teresa said a couple of pages ago that she was already in contact with the producers, so perhaps they just hurried up their plans.
Leslie,
That's actually good news to me. I know that sometimes our local stations just "decide" that we in Central FL won't want to see or aren't interested in watching what the networks are showing and show something else instead. I'm glad that this is probably not the case here, since you show the same thing up there in DC.
Lani
I talked to the producer today - it IS this Friday. This is sweeps week on TV and they think this is a strong story line for the sweeps. There are no guarantees in life and TV shows have multiple producers etc. someone may shift the segment choices that they have in the can at any time.
Well, I'll be watching, whether it be HPV-OC or tummy tucks. Thank you Brian.
Lani
Darn it.....I will be in the HBO chamber when this airs.
Im pretty technogolically inhibited so dont have Tivo or a dvr and cant program the vcr or dvd player either. Im hoping I will be able to watch it online. Anybody know if that possible?
Congratulations Teresa!
I don't know how you felt about it, but I think that it was very well done. You're a star in my book, shining brightly for the cause. My OC was from smoking & drinking, but even just hearing about the 2-week rule would have helped me. I waited almost 2 months before I had my "sore" checked.
You've made a difference for the good and it would be wonderful if the show and story were repeated often. I'd like to see it where young people would more likely see it, but I don't know if stations like MTV ever get serious. It would be great, though. It could save so many.
Again, you did GREAT!
Lani
I was working and didn't get to see it. Can anyone post a link to it if it becomes available?
Just finished watching the segment here in DC. Travis Stork (in blue scrubs) was a bit of a clueless tool, I thought, but that's how a lot of the posters on "The Bachelor" board over at Television Without Pity saw him as well, so that's not really a surprise. More importantly -- Teresa did a great job, and the dentist, Bill Dorfman, was informative as well, urging that a thorough oral cancer screening, including the VELscope (which he demonstrated), be part of every hygiene appointment.
The website is
www.thedoctorstv.com -- and OCF is one of the links on the
"Additional Resources" page.
I set my TIVO and the local Philly affiliates pre-empted all shows today with the Phillies Parade. Didn't they know how important this show was to me? Not that the Parade wasn't, but I was taping it on another channel.
I went to the website and I couldn't find a way to view the show there.
Leslie, did I miss something or is it not available on-line?
Jerry
Here is the part of the website for today's show:
http://www.thedoctorstv.com/main/show_page/58 The video on that page is a promo for the show ("next -- can you get suddenly slimmer in less than an hour?" and such). The synopsis gives a few paragraphs about the OC segment, but no video and not much detail. (But you can order a DVD of the whole show for $29.95!)
Sheesh.
Maybe we could all chip in and post the video on here somehow. LOL
I sure wish I had been able to see it. Thank you Teresa for doing the show.
Jerry,
I also tried to record The Doctors on the Philadelphia station, but got the parade instead. Some of the stations are rebroadcasting the afternoon shows during the wee hours of the morning, but not The Doctors. I sent the CBS station a note stating a number of us wanted to view this episode and ask if it would be rebroadcast. I'll let you know if I hear anything.
Leslie, Lani----thank you.
The segment did not come off as badly as I feared. I honestly don't think they needed to have me there in the studio, though. I did think it was put together better than the GMA clip. The word is getting out, slowly but surely.
Teresa,
I disagree. I think having you there to talk to was a definite plus to the program and gave it that much greater impact. You came off as an intelligent, charming, and very "real" person for others to identify with.
Lani
Susan,
That was a great idea and I would apprecitate your letting me know. I was very disappointed that I couldn't watch it.
Jerry
Any update on getting to see it after the fact?