#61289 07-16-2007 05:39 PM | Joined: Dec 2006 Posts: 46 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2006 Posts: 46 | Those of you who have been dedicated posters might remember me.I'm the guy who went through Radiation and surgery and never got my voice back. Well there was a good reason, the cancer came back and almost killed me. It's a long story but the end result is I got a total larygnectomy! Yup the whole deal, I got out of the hospital about 3 weeks ago. JAM or AMY or any kind soul. I have a question for you. After TL how do I find out what the recurrence statistic for lmyph node mestastis? My ENT surgeon suggested I go talk to a Radiation doctor and he wants to give me 6 weeks on my nodes. I insisted on a PET/CT scan to see what is going on. Well after going through it once in November, I really don't want to go through that twice. Radiation didn't stop my cancer at all, last time, so if it is in my nodes, will it stop it now that it is small amount? I don't know what to do. I don't expect you to tell me what to do but some advise would help. Thanx Tony
46 yr old-SCC TVC 9/06. Surgery - Radiation X30 - Last Tx Nov 29, 06 - never got voice back - Total Larygnectomy Jun 5,07/ X30 IMRT started Aug 9,07 - 2 Tx Cisplatin 21 days apart / Aug 15,07 to Sept 15,2007 I'm done with treatment!
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#61290 07-17-2007 10:44 AM | 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 Tony, I replied to your email earlier today. I don't understand why a ND wasn't done at the time of the TL if you had lymph node involvement and had already had prior radiation. Where are you being treated? Would a second opinion be in order?
Take care, Eileen
---------------------- 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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#61291 07-17-2007 02:17 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Tony, I hope you'll repost the e-mail you sent me because I think you will get some good info on the board. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#61292 07-17-2007 03:22 PM | Joined: Dec 2006 Posts: 46 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2006 Posts: 46 | Dear Amy, It has been a while since I talked with you. How are you? I hope you are well. Well, a lot has happened in that time. Remember I couldn
46 yr old-SCC TVC 9/06. Surgery - Radiation X30 - Last Tx Nov 29, 06 - never got voice back - Total Larygnectomy Jun 5,07/ X30 IMRT started Aug 9,07 - 2 Tx Cisplatin 21 days apart / Aug 15,07 to Sept 15,2007 I'm done with treatment!
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#61293 07-17-2007 03:44 PM | Joined: Dec 2006 Posts: 46 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2006 Posts: 46 | Dear Amy, I posted the letter I wrote to you. I am looking for advise from the good people that read this forum. I am not expecting to get all of the answers to my problems but any advise will do, I have my PET scan on Thursday (1 Day) and my appt with the oncologist is Monday. I have been all over the internet and the situation is foggy at best. Thank you Tony
46 yr old-SCC TVC 9/06. Surgery - Radiation X30 - Last Tx Nov 29, 06 - never got voice back - Total Larygnectomy Jun 5,07/ X30 IMRT started Aug 9,07 - 2 Tx Cisplatin 21 days apart / Aug 15,07 to Sept 15,2007 I'm done with treatment!
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#61294 07-17-2007 03:53 PM | Joined: Dec 2006 Posts: 46 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2006 Posts: 46 | Dear Eileen, I can only guess that my surgeon did her very best. I owe her my life. I can ask her but she obviously didn't feel it was necesary at the time. She feels that Radiation will mop up the situation. I have found some writings about early Laryngectomies and about 50% died from recuurance. of course this was early on in the development of the procedure. So there is evidence to say that Radiation is the way. I just don't know if my first radiation covered the area. I think I would have known if it did. I'm sure the glands would have hurt worse than my throat. Thanks Tony
46 yr old-SCC TVC 9/06. Surgery - Radiation X30 - Last Tx Nov 29, 06 - never got voice back - Total Larygnectomy Jun 5,07/ X30 IMRT started Aug 9,07 - 2 Tx Cisplatin 21 days apart / Aug 15,07 to Sept 15,2007 I'm done with treatment!
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#61295 07-18-2007 06:27 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Tony, You should be happy with getting the surgery for the voice prosthesis. I was one of the lucky ones who had it installed at the same time as the surgery. I found it easy to use although it did clog from time to time and they forget to give me the brush to clean it and unclog it.
I was told my radiation should start 6-8 weeks after my first ND so it sounds like she is in the right time frame. The surgery to install the prosthesis is simply making a small cut in the esphageal wall (I am no surgeon, remember) and installing the device. The latter is no big deal and takes two minutes. My speech therapist changes mine every three months. You can't ignore these ndoes in the neck, so either radiation or surgery or both needs to be done.
You also need to get the Barretts checked out and treated. You don't want this to turn into cancer of the esphagus. I suggest you might ask if whatever needs to be done should be done BEFORE they put in the prosthesis because when they did tried to get the camera down my esaphagus to check things out, they could not get it past the prosthesis.
Keep us posted.
Take care, Eileen
---------------------- 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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