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#73177 04-16-2008 08:58 AM
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TomK Offline OP
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Just thought I would pass on to everyone that a show called The Truth About Cancer will be on PBS tonight. Here is a link about the show http://www.pbs.org/wgbh/takeonestep/cancer/index.html
At the top there is a place to check where and when it will be playing.

Last edited by Brian Hill; 04-16-2008 05:51 PM.

Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
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Bringing this to top


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.
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An amazing dialog.... if you didn't see it, check your PBS listing for when it will be on again. It is not a blue sky, everything is going to be wonderful story line. It is hopeful, but does not depict the current situation in any false optimism, other than a much less than sunny gray color -that we are not currently winning the battle against the many forms of this disease, but making small bits of progress and understanding. It has moments of brutal, raw candidness. Painting the battles in brush storkes of raw emotion. I found myself with a lump in my throat through parts of it. But in the end, I am glad that I watched.

As with all those who pass through the world of these OCF forums, I was struck by the emotional courage of those in this battle. I am constantly inspired by the ennobling inner strengths exhibited, by not just those in the story, but equally by the people who have crossed my life via OCF. It is a privilege to be part of their journey regardless of its destination. The show was sobering in many respects, but worthy of your time.

If you are emotionally fragile right now, tape it for later. I am 10 years from my diagnosis, and I still carry the emotions of the early years, and I am still impacted by specters in the shadows of my routine aches and pains, which never let my mind go to anything other than think of the big C again, no matter the real cause. It is perhaps how I will always be. But the fears and the uncertainty have become so much a part of my emotional make up, that I wear them like an old familiar sweatshirt. One that perhaps I should have discarded long ago, unattractive to look at, but strangely comfortable in my acceptance of what it is, and how used I have become to its fit and feel. Perhaps this is survivorship....


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.
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I recorded it and watched it last night. There is an HD version avaiable as well plus you can stream it from the PBS site. It was very moving and well put together. I especially like the talk section at the end.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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As a "survivor" who won't have his six month PET scan until next month, I found the show very moving but especially enjoyed the talk section that followed with Linda Ellerbe who dished on how upsetting it was to be constantly told first thing by well meaning friends and colleagues: "Oh you'll be fine". Brian's post of the feelings and spectres even a decade later captures one of the hardest parts of cancer for me: the constant checking by doctors for "reoccurance". Be forewarned, this show's protagonists don't have happy endings. I thought it also odd for the show to comment that Lance Armstrong won the cancer lottery when the male doctors who were on the Linda Ellerbee part were all prostate cancer survivors. While I know first hand from watching my father die from metastic prostate cancer how painful and traumatic these cancers can be, I also know the special burden that oral cancer places on us. If there was any mention of OCF issues, I missed it (but then my eyes often watered up at some scenes). Any OCF members with PBS connections? The stories on this forum would make a riveting show.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

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As usual the show made no mention of oral and head and neck cancers. It did have something in one spot about brain cancer, but ironically brain cancer is a separate type and not part of the head and neck cancer group.


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.
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[quote=Brian Hill]As usual the show made no mention of oral and head and neck cancers. It did have something in one spot about brain cancer, but ironically brain cancer is a separate type and not part of the head and neck cancer group. [/quote]

What I constantly find amazing, wait, let me back up.

My wife works in the medical field. When I was diagnosed she was working with a group of ophthalmologists, some of which specialize in eye cancers and do research at St. Jude here in Memphis.
She is now working for an ear group, which has ENT and ENTH&N on staff.

Both of these groups have told her what a "rare" cancer I had. Of course all of he standard questions about how much did I smoke etc, then they are blown away by the negative answers. Perception is everything.

Kevin


18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
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You are so right. It is a factor of perception and reference. If you compare it to 200,000 breast cancers a year, or the number of lung cancers, it is dwarfed and seems small, but I hate to say rare. Ocular cancers and other head and neck cancers are rare. Not oral cancers. But all you have to do is look at the death rates as a percentage, and 98% of ALL breast cancer patients are going to survive. (What you are seeing with that is early detection's impact.) Compare that with the 50% 5 year rate for oral and you would think that it would get more attention. This is what OCF HAS to change.


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.
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I watched that show and found it very interesting.


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
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Brian,
I'm a data junkie.
I'm always thinking of stats, and how to best present the real picture.
Do you think it would be possible to somehow depict the location of the OCF members and caregivers? It may give a visual that could be especially useful when trying to show how many people are afflicted with head and neck cancer in the states and across the globe to PBS, doctors, all types of venues. I noticed as a caregiver from the Buckeye state, that there seems to be a lot of us here from Ohio. This info could even help bring awareness to our health care system to show where there is a greater need for CCC's around the world that specialize in head and neck cancers. Many people travel hours to get to their CCC's. It would be great to help get good treatment where it's needed.
Or at the least to show what a need there is for help with transportation to treatment.

Maybe the location of members could be pulled from the profiles to be compiled and then could be used to make graphs/maps, etc. It might be a visual that people could use when they are guest speakers, and so on.

What do you think?


Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"

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