#9542 02-11-2007 02:15 AM | Joined: Feb 2005 Posts: 7 Member | OP  Member
Joined: Feb 2005 Posts: 7 | Good morning, A Bay Area newspaper is running a series of articles written by a recent survivor at: http://www.contracostatimes.com/mld/cctimes/16669816.htm This looks to be a good first person account of treatment and survivor issues. Please have a read. I had one concern about the first article in the series and that was the use of the word cured and the implication that after a year the cancer has been completely defeated (no mention of the 5 years of purgatory where recurrence has a high probability). Have a read, James
7/04 SCC Stage II Tongue
8/04 Hemi-glossectomi
9/04 IMRTx33
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#9543 02-11-2007 02:02 PM | Joined: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 53 | and typical of an unreviewed account, clearly that was a lymph node in his neck not a cyst. I also agree about the word cured. I prefer cancer free... it's a state I hope to stay in for some time, but there are no guarantees. Notice also that even with a pathologist for a wife, he did not go through a tumor board, or to a ccc. While he has come out of this so far, most of us on this board know all too well that the path this particualr portion of the story details is not the path that is an optimum journey through the halls of medicine. I commend him for wanting to get his story out there, but since this was likely and unknown primary oral cancer, it would have been nice if he had said so ...the disease could use the exposure.
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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#9544 02-12-2007 09:45 AM | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Interestingly, some months ago my ENT was telling me that if my scans one year post-rad were OK, we could use the other 'C' word, "cured". But he did couch it in terms of statiscal probability over five years. BTW, since I subsequently did have clean scans, he told me that in my case, the five-year cancer-free likelihood was now at 90% -- From a half-full perspective, that's a low probability of return; for pessimists, that's a 10% chance of return, lots better odds than a lottery ticket! Yesterday, I was vacuuming the bed of my pickup truck, backing out of it and managed to lose my balance and tumbled out onto the ground -- Could have broken my neck and died, which would have put my probability of being cancer-free at 100% for the last few moments of my life, so what does it really all mean? 
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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#9545 02-21-2007 02:44 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 218 | Please not that all four parts of the article mentioned above have been posted to the OCF News section. See http://www.oralcancerfoundation.org/news/titles.asp to access any or all of them. - Sheldon
Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
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