| Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Thank you, Brian, for being on top of this yet again. As someone who did end up suffering long term dysphagia to the point where I still require a PEG to get all my oral nutrition (and I am an extremely rare case to any of you wondering if this happens often) I feel the need to say that I find it extremely hurtful and frustrating that anyone would perpetuate the clearly mistaken notion that my swallowing problems were in any way caused because I was "dependent " on my PEG--with the impliciation being that there is a psychological dependendency that goes on. It is true I was and am *physically* dependent on my PEG and each and every day for three years I have HATED that but it has also saved my life. My dysphagia is not and never was a matter of just not *wanting* to swallow badly enough because I ahd a PEG, it was caused by radiation, and to imply it could be caused by having the PEG--even when one has been informed several times, as David has by Brian, that that assumption has NO medical support-- is really insulting as well as misleading to new people trying to make hard decisions.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Introduction - Brother has SCC - Mouth, lymph node
| Tizcolleen | 04-21-2008 04:13 PM |
Re: Introduction - Brother has SCC - Mouth, lymph node
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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Re: Introduction - Brother has SCC - Mouth, lymph
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