| | Joined: Mar 2002 Posts: 4,912 Likes: 57 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 57 | While they did do this very short story, and that had some benefit, I was disappointed given all the phone conversations and emails that gave them good information to use. It was rushed for sure, incomplete, and worse they mentioned the oral test for HPV that dentists are starting to "sell" which does not even provide benefit to a patient. Could they have talked any faster? Could they not have used an image or two, or have a survivor on hand to put a face on the whole issue? I am really tired of the media, and their sound bite/bumper sticker mentality, rushing through tons of subjects doing none of them justice, or even getting the information wrong.
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.
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Brian,
I couldn't agree more. I was really disappointed when I saw it, and had been hoping for a much better story. So many of my friends and family have no idea what oral cancer does to a person. I had no idea, until I got it! I guess we should be glad it was even mentioned at all.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Maybe OCF needs to get on Dr. Phil.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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