#28343 11-04-2006 07:48 AM | Joined: Mar 2005 Posts: 54 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2005 Posts: 54 | Hello once again all,
Well, I received the diagnosis and am somewhat relieved and a bit PISSED! I do NOT have recurrent oral cancer (THANK GOD....LITERALLY!!!). I do have a SECOND diagnosis of severe dysplasia since my cancer surgery. The first time, my ENT convinced me that the dysplasia was due to the surgery and that I did not need to treat it (this was several months after his original recommendation of going to Roswell Park for Photodynamic Therapy). I was never comfortable with this decision (I even went to Roswell on my own, AMA, for evaluation fully prepared to incur any costs because I could not get a letter of medical necessity). I kept a VERY CLOSE watch, and it has been 19 months and a new area appeared. My ENT believes that I am just prone to recurring dysplasia, I am not convinced that they are not the same atypical cells never full removed, spreading to a slightly different location (all on the same side of the mouth...from lower gingiva to posterior floor of mouth, to anterior tonsillar pillar). Although I will probably never know, I am HIGHLY suspicious. I love my ENT, but I think he may have made a poor judgment call which upsets me. I would have had this treated 18 months ago.
Anyway, thank GOD it was not cancer, and I will be going to Roswell Park and participating in their clinical trial for the Photodynamic Therapy, which has been very successful in treating dysplasia and superficial early cancer. It is approved treatment for certain other types of cancer. I will let you all know how it goes, I hear VERY painful, but that is the least of my worries. Thank you all again for your support and advise and I will keep you posted as things progress!!! God Bless!
Rick
Rick T Stage II SCC(T2N0M0). Dx:Jan.05 Surgical removal w/Neck Dissection (nodes clear) Feb 1,2005.
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#28344 11-04-2006 08:48 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Just remember that dysplasia is the state of a cell that is no longer normal, but is not fully malignant yet. If this were cervical cancer it would be surgically removed, because the question is always there...when will it have enough mutations take place to move further towards malignancy?
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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