#70318 02-22-2008 04:41 AM | Joined: Nov 2007 Posts: 45 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 45 | Had 1/4 tongue, left side, removed 8 years ago - it's back. They thought only on the left side again and since I had had 33 rad treatments they decided on Brachytheropy - Had CT, PET and MRI- all showed the ca was on the left side and had not crossed over. then just as I was about to have it done two spots came up on the right side. A bio showed both postive. Now they tell me the only way to go is to have a total glossectomy. If you have had one can you please give me an idea of what to expect. I'm trying to be brave but it scares me to think I will no longer be able to eat or talk. Please help if you have been through this?
Thanks - Con
con
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hi Connie,
I'm so sorry to read this. I have no info, but as you know there are many on here who do.
Let me know how you make out.
Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Nov 2007 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 45 | Thank You, Hopefully someone can lead me through this. For the first time through all of this I am scared. Wondering what life would be like afterwards.
Con
con
| | | | | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | There are some here who have experienced glossectomy. I'm sure that one of them will log in soon and share their experiences with you.
Sending positive thoughts your way and hoping for the very best for you..
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
| | | | | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | Con - if you haven't already, read Kate's blog on her journey through having a total glossectomy - very inspirational and I am sure it won't be long before she signs on and contacts you http://www.oralcancerfoundation.org/forums/ubbthreads.php/ubb/showflat/Number/63096#Post63096Best to you
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | | Joined: Nov 2007 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 45 | Thank you. I just read it and boy did it help me. I am much older than her but feel young for my age and I too think I can fight this. I go to the Dr. on Monday that would do the surgery. Thanks to Kate's journey I have more questions to ask him. Thanks again
Con
con
| | | | | Joined: Nov 2007 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 45 | I just posted this to Sophia's post but will share it with all. The ENT sent me to a oncologist surgern, quite a well known one, and he gave me a slight bit of hope. I go in Thurs. for a body scope and to have a port put in and then start chemo. Unless it changes I will have chemo one time a week for 2 months and then surgery. He may be able to save at least a bit of my tongue. This has been a nightmare. I discovered the spot on the left side in Nov. Got in to the ENT in Dec. for bio. Saw the oncologist and radiologist end of Dec. and spent the next 3 months having test and trying to decide what to do. By the time they decided to try the internal inplants I had noticed the spots on the right side and bottom of my mouth and that put a
stop to the possibility of having the internal inplants. Then my ENT said the only thing to do was to have a total glossectomy.
The new oncologist surgern has given me some hope. It does seem though that 2 months of chem only one time a week stretches this out even more. I have noticed increased size of my left side and it is quite sore. I giving it all I got! Keep you all posted.
Con
con
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Did they tell you what chemos they intend to use?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2006 Posts: 199 | Con - I am glad that you read Kate's blog and that it helped. Kate certainly showed a huge amount of courage and determination to beat this, and you sound like you are ready to do the same. Keep us posted on your blog and best of luck to you.
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
| | | | | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Con, just want to let you know that we're thinking of you during this trying time....hoping for the best outcome...keep us posted.
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
| | |
| Forums23 Topics18,168 Posts196,928 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
