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#80980 09-23-2008 04:08 PM | Joined: May 2007 Posts: 24 Member | OP  Member
Joined: May 2007 Posts: 24 | Hi my name is Kathleen I have been a member since 2007 I would like to know who has had a laryngectomy. I have scar tissue blocking my trachea and food pipe. My Doc says it should not be growing this far out of treatment. I am wearing a trach and do not know when they will remove it He wants it to stabilize. HELP He really does not want to remove my voice box.
SCC T3N1 right side tongue DX7/24/06 44 yrs old
Tx 42 IMRT started 9/01/06 Cysplatin & 5fu 2x treatment ended 10/31/06. Partial neck discection 3/07 on right side.
Had tracheostomy 4/08. Had total Laryngectomy 6/09
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Hi, Kathleen --
Go to the User List at the top of each page and search for Eileen, who had a laryngectomy in 2001. Her e-mail address is in her profile.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Lesie,
Katrina has been PMing me on a bunch of questions she had about the surgery. Although she has a temporary trach now because she has blockage from scar tissue in the esophagus. What she is really looking for a way to avoid having the surgery that I had. I asked her to open her own thread in hopes that someone else had had blcokage of the esophagus from scar tissue resulting from radiation that didn't require total laryngectomy. I remember Marliz had photo dynamic therapy on the esophagus but don't remember exactly what the stricture was and can't seem t find the string.
Here is one of the PMs I received from Katrina.
I had tongue cancer and the radiation built up scar tissue above my voice box so my airway and food pipe is blocked I had a trach put in in April. It is suppose to be temporary but my doc does not know what to do about the situation he said more scar tissue is growing and he does not know why. He wants it to stablize he really does not want to do a laryngectomy. I go to university hospital. I do not want it done because I was an avid swimmer till I got sick. I love to swim and this procedure would end that. I am afraid of not talking to. I am going to Johns Hopkins for another opinion Can you eat anything you want? Why did you have it done? I had a speech therapist come to my house to help me with swallowing excercises. She was telling me of the prothesis that goes from your espohogus to the stoma so you can talk. My doc says this is a difficult surgery.
If anyone has any suggestions, please respond on this thread.
Take care,
Eileen
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Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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