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#50404 10-11-2007 06:05 PM
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About a year ago I started pitching a bunch of TV series, writers, producers, and more on the idea doing a story that involved oral cancer in the plot line. Essentially there is an opportunity to tell an interesting story, inform the public, and do good public service at the same time. Hundreds of calls later in 2006, we had three interested parties, two prime time shows, and a daytime soap. None were guarantees, but they were serious about considering the opportunity. I offered to provide all the writers techinical background as needed, gratis of course, without credit. I really wanted to tell the HPV story line, and some were more receptive to the idea than others.

Gold was struck tonight as Grey's Anatomy had a story line that involves a paitent with tongue cancer and a graft to reconstruct her. She is a voracious talker, and when she askes is she will be able to speak after it all, is told yes... but whether people will be able to understand her is another question. As TV does what it will, of course she is being treated in a facility in which cancer treatment is not the specialty, and the procedure is spoken of as cutting edge and only a few of them have been done.... (they should have polled the people on this board to get a feel for how many thousands have been done.) Unfortunately the story line is more about surgeons (not head and neck specialists) who have not done this technique/procedure before are going to do the cutting edge procedure. DAMN! (TV misses yet another opportunity to create meaningful drama and screws it up.) Where is Bruce Paltrow and the socially concious TV that he pioneered when you need him.... (there's different story, both sad and beautiful here for those that are paying attention).

You can tell by now this is not one of the shows that opted to have me be the technical consultant to the writers. As a matter of fact I think the original people pitched are not even there this writing season. But hey, tongue cancer, hemiglossectomy, and the QOL consequenses of it in prime time. You try to get the word out anyway that you can. And when you are not a wealthy organization you have to be creative and think off the grid.

I am bound by non disclosure, and I am sure that this board is not going to get into the mainstream media. But in the one other show where we have a yes, we have a real tongue cancer survivor actress playing a person who gets tongue cancer.... art imitates life for real. Stay tuned, and don't change that channel....


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.
#50405 10-12-2007 01:50 AM
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Hi Brian,

I saw the show myself last night and thought YAHOO-at least it puts a "spotlight" on the issue. SO many people that know of my friends diagnosis say "What??? I didn't know you could get cancer in your tonsil!" So, even though it wasn't terribly realistic, at least it will make some people think.....
I also noticed when I went to the dentist myself the other day I recieved a very thorough examination of my tongue, under my tongue and the inside of both cheeks...so there is some improvement.
Keep on getting the word out Brian! We'll help all we can.
Liz


CG to friend Mary. SCC Stage IV-A of rt. tonsil, mets. to lymph node on rt. DX 06/07,tonsillectomy 08/07, Chemo Cisplatin, Taxotere and 5FU X3 cycles; RAD completed 1/20/08 RND scheduled for 3/08. 54yr.old, NS, social drinker.
#50406 10-12-2007 02:39 AM
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Brian - saw the show too - I was glad that at least someone was talking about this on such a popular show, but did have to get a little frustrated at the way they presented the surgery, etc. (Letting someone operate on me who had never done a very complex difficult procedure - and not in a CCC? Don't think so.) I was also interested to see how well she looked right after surgery - no trach, really minimal swelling - and no talk at all of a neck dissection?? Oh well, kudos to you for AT LEAST getting this on prime time - now people who look at me in horror when I tell them I had tongue cancer might have a little more knowledge...

I thought about trying to send a response to the show regarding some of this - thanking them for spotlighting this but reminding them of the importance of making sure their medical facts are a little more realistic...


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
#50407 10-12-2007 03:03 PM
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This show is less about medicine and ore about personal relationships. It is unlike many medical shows of the past, St. Elsewhere for example, in which Paltrow went to great pains to not only explore the impact of medicine on it practitioners and patients, but to get the medical facts correct. His show showcased the ills of the time both of society and medical, in a manner that informed while entertaining people. It was the first show to openly talk about AIDS, and through many characters explored its social and personal impacts - homosexuality, fear of death, guilt, people becoming pariahs of society with a disease that they had gotten by means not related to direct sexual contact, all were looked at in depth. Producer/directors like Bruce opened the public's mind to the realities of the situation in a multidimensional way. Grey's after the first season, degenerated in to improbable personal situations, medical improbabilities, and missed the opportunity to inform as well as entertain.

I have often had lunch with Jack Klugman after he made the PSA for OCF. I am lucky to have developed a friendship with him, and he is quite the raconteur. But he has mentioned of accounts in which people come up to him to relate how they learned some medical factoid via Quincy and were able to apply it in their own lives, once in actually saving a life.

Clearly the dumbing down of our TV media, from our news programs that only tell you what they think you can absorb in 3 minutes or less, and in which news is served up as entertainment, the advent of mindless reality shows, is depressing. There is a book I just read about the value of telling good stories. How they make ideas stick with people for prolonged periods of time, motivate them to change, and more. TV today is tabloid fodder in too many instances, and the richness of good story telling has been replaced with the superficial.

On a more positive note; in order to effect change you must first define reality. America


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.
#50408 10-12-2007 03:38 PM
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Brian,

I guess I'm not the only guy that watched the nighttime soap opera, Grey's Anatomy" last night. Although I don't pay full attention to the show, my eyes darted up from the newspaper to the TV when I heard the words "tongue cancer". My wife and I were stunned to silence, because we couldn't believe what were were seeing and hearing and we didn't want to miss a word. My first reaction was "WOW" now we've made the big time.

Although the script was missing some valuable information, I wonder how many people watching never knew there was such a thing as tongue cancer. Well, now they do..after all Dr. McDreamy and Dr. McSteamy did the surgery. That's a good thing. Sure I was disappointed that they got some things wrong and that they missed some facts, but this is the first time I've ever seen anything about oral cancer on primetime, non-news, TV.

I wish they had somehow found you to be their technical advisor. But, the average person watching, didn't know what was missing and maybe someone besides OCF members were talking about tongue cancer today.

I had no idea that the actress was a survivor.

And speaking of TV, my Healthwatch TV spot on ABC about the VELscope, was pre-empted this week by a breast cancer story, but there is a good chance it will be aired next week.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#50409 10-12-2007 03:40 PM
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Hi Brian,
I saw the show last night also, was about to change the channel until I heard about the surgery. I was delighted that awareness of this disease was touched upon, wish they could have been more definitive/realistic. Today I went to get my haircut, the stylist commented on how long it had gotten and I explained that I have been taking care of my mother who just completed tx's for tongue cancer. She scared me as she suddenly lunged forward and faced me, telling me she had just seen Grey's last night, and there was a woman who had that! She asked me some questions, one being, is it that easy to take care of, go into the ER and they just decide to do surgery? I told her no, that I definitely agreed with Dr. McDreamy, that they had no business performing that surgery.
Next week I will be attending another D.A.R.E. meeting at my daughters elementary school. This week I spoke with the officer in charge about bringing in my mom's mask and her mouth guard she had to wear during brachytherapy, and pictures of the different kinds of head and neck cancers. He was delighted, he can't use them at Jessie's school but can in the middle school. Hopefully it will help in educating our youth.
Thanks for all that you do!
Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
#50410 10-12-2007 03:59 PM
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Jerry the actress on Grey's is not a survivor. This is the first of TWO TV opportunities. The other for this winter has the survivor in it. That is the one I cannot talk about yet.


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.
#50411 10-13-2007 02:16 AM
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Sorry, I misread that line.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#50412 10-13-2007 03:35 AM
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Brian - just have to add that I agree with you about St. Elsewhere - I loved it for it's realness and also the topics they talked about. One of my favorite shows of all time, another being China Beach - which also dealt very well with the realities and horror of medicine on the front lines... Being a nurse, I love medical shows but Greys has really gone down hill fast - it IS a soap opera and so unrealistic.. I do think that these type of shows should think about their opportunity to educate people and, just important, the way that they portray clinicians. Grey's has been in the dog house for the way they portray nurses, especially - many letters have been written to them and most recently, have appeared in the press about it. I won't get on my soap box here but if anyone's interested, go to the Center for Nursing Advocacy (www.nursingadvocacy.org.

P.S One final thought to leave you with - I can't resist - why does anyone get admitted to the hospital these days, with everything that can be done as an Outpatient? The answer - to receive 24x7 nursing care....


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
#50413 10-14-2007 04:11 AM
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On the CBS show, Sunday Morning, the focus of coverage was on health, both physical and mental.

There was a short segment on Levon Helm, a former member of The Band from the 60s and 70s, who is a survivor of larynx cancer.

He's one of the lucky ones who appears relatively unscathed by the treatments and will soon release a new album called Dirt Farmer.

It was an short but interesting segment again giving some attention to a H/N cancer.

Loretta


C/G to husband SCC of right tonsil, Dx 5/02. Tx concurrent rad with Taxol and Cisplatin. Consolidation therapy Cisplatin and 5-FU. Recurrence 9/06, neck dissection 10/06. Tx with twice daily radiation; two in-patient infusions of Cisplatin.
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