| | Joined: Apr 2010 Posts: 27 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 27 | I may be facing this- my cancer is extremely aggressive and just keeps popping back up like those damn weebles I used to punch as a kid.
My surgeon told me today that now I have a suspicious spot on the right side of my tongue (to date everything has been on the left side) and that if it comes back positive that I may have to have my tongue removed. I am fully expecting for the tests to come back positive with my history over the last year. And if I have my tongue removed, what kind of life will I have? would I even want to live it? Please oh please- if anyone has had something this dramatic, I need to know. I have a couple of weeks before I leave for Seattle for surgery on my neck and perhaps the tongue if it is back. Anything you can tell me will be great.
Lisa from Montana
40 years old
squamous cell-left lateral tongue & lymph with free flap skin graft and re-section,
PEG tube,
Total Glossectomy without Laryngotomy April 2011
Still mouthy as hell
plenty of war wounds
craving a cheeseburger
***10/14/11 UPDATE--Lisa has passed away
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Lisa -- Look for posts by misskate, who was diagnosed in 2007 and had a total glossectomy. (Go to the User List link, above, and click on M -- she's on the first page.) You can get her e-mail from her profile and write her. She is very generous in sharing her knowledge and kept a blog here that described her treatment experience.
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Lisa- Please PM me or write here with any questions. I had 90% of my tongue removed and I eat most regular foods. I am fairly intelligible to. I have a signifigant speech impediment but I get along very well in life. My recovery isn't 100% typical but I am sure that you could enjoy some or all of my sucesses.
If you have to have a full glossectomy your life will go on and be good again.
Life is always worth living. There are so many pleasures you can have other than food. Freindship, love, family, warm beautiful days- even rainy sad days are all worth going through this treatment.
You can do this. I understand the shock of being told that you have to have your tongue removed. Its unimaginable. I almost passed out when they told me.
Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Sep 2010 Posts: 63 "OCF Kiwi Down Under" Supporting Member (50+ posts) | | "OCF Kiwi Down Under" Supporting Member (50+ posts)
Joined: Sep 2010 Posts: 63 | i had total as well, probably the fact i live alone has meant i havent needed to talk and thats no doubt an extra detriment to my voice quality now ( find it more warbly ) . as kate said we all vary in our success , i have hypersalivation but havnt been able to conquer any form of eating at this stage 2 yrs post surgery .
45 yrs. peg tube jan 07/09 TOTAL GLOSSECTOMY jan 12/09
T3NOscc oral(ex smoker )
open tracheostomy , removed oct 12/09
modified neck dissection lymph nodes I to IV
rectus abdominal flap + full dental removal
30 day radiation treatment ,diagnosed with lung cancer oct 2011
| | | | | Joined: Apr 2010 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 27 | You guys are pretty amazing, thanks for your messages,I'm just glad to hear that you can have a life after such a surgery. I will get the results of my biopsy tomorrow and then probably get more direction by monday. I didn't even go to sleep at all last night despite a sleeping pill and zanax. I worked a 10 hour day and had a meltdown at the end (duh). I am just so tired and scared.
Lisa from Montana
40 years old
squamous cell-left lateral tongue & lymph with free flap skin graft and re-section,
PEG tube,
Total Glossectomy without Laryngotomy April 2011
Still mouthy as hell
plenty of war wounds
craving a cheeseburger
***10/14/11 UPDATE--Lisa has passed away
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Lisa: the very best to you. You're in my thoughts and my fingers, toes and eyes are crossed.
david2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | My thoughts are with you Lisa and I am wondering if you now have the results of the biopsy? You have many friends here wishing you only the very best news.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hey Lisa,
ohhh that sucks - xanax and sleeping pill still didn't put you to sleep? I am so sorry. I'm sure you were just absolutely beyond exhausted. I'm so sorry. I totally understand that feeling though. Try as hard as you can to not let your mind wander into dangerous territory because it isn't going to help you get through this. Its so overwhelming and upsetting. I know very well how scared you feel.
I'm thinking of you and sending you good thoughts. We are here to help and support you during this trying time.
Try and relax as much as you can and get rest. Your body needs rest to be able to fight and get better.
LOVE, Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Okay Lisa - you got the results yesterday - write as soon as you can and remember we are all here for you. Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Lisa, checking for an update. Im hoping everything is alright and you are doing ok. I will keep you in my prayers.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Yooooo Hoooooooooo Lisa. Where are you woman? What happened with your appointment last week. Please update, and if anyone from OCF has talked to Lisa, it would be great to hear how she is doing.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hey Lisa,
Checked in to see how you are doing. A little worried about you as we haven't heard anything back. When you feel up to it drop us a line.
You are in my thoughts and prayers. I know this is a tough time. We are here for you if you need support.
LOVE, Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Apr 2010 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 27 | Ok guys- full glossectomy is on its way. God, I wonder if I will be alive a year from now.
Lisa from Montana
40 years old
squamous cell-left lateral tongue & lymph with free flap skin graft and re-section,
PEG tube,
Total Glossectomy without Laryngotomy April 2011
Still mouthy as hell
plenty of war wounds
craving a cheeseburger
***10/14/11 UPDATE--Lisa has passed away
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Lisa, Im very sorry you are going thru another recurrence. Prayers are being said for a full recovery and an end to the recurrences.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Lisa: Sent you a message on your Carepages site as well. This recurrance really must feel devastating and we are here for you.
Wanted to tell you that we all wonder if we will be alive a year from now - the only difference between us and the "general public" is that they just don't think about it and we do. There are no guarantees for any of us.
I know from experience that right now you have just been handed this news while you are STILL dealing with the pain. Regardless of what they do - once you are rid of the pain - THEN you can see where you are at - what you can do and what you need to make adjustments for. One way or another - you will get done what you need to get done! You have that determined spirit.
It is difficult to think clearly when you have the pain. I pray that the surgery will remove all of that from your life.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | There is no guarantee that any of us will even see a tomorrow. So it is one day at a time for all living, breathing life.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2010 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 27 | I wish that I could have you all in my living room. Anyone want to visit Glacier National Park with free lodging?
My MRI looked like shit pardon my language. Its in my neck too. So they are gonna do a larnyngotomy as well. I wont even be 41 and living life as a creepy voice box lady. I know that I am in a serious race against this cancer and that it might win but I cant help feeling sorry for myself from time to time.
I just love you guys, you are the only ones who really know what life is like for me. Please dont go away!!!
Right now my moods are good, but I sure do have bad days.
Lisa from Montana
40 years old
squamous cell-left lateral tongue & lymph with free flap skin graft and re-section,
PEG tube,
Total Glossectomy without Laryngotomy April 2011
Still mouthy as hell
plenty of war wounds
craving a cheeseburger
***10/14/11 UPDATE--Lisa has passed away
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Lisa- Hope you are doing OK. Thinking of you. Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hey there sorry you are having a tough go of it - this disease sucks a** - you will not be creepy - you will still be the same wonderful person you were - don't let this battle change you in any way but good. We all have our down days, it's natural... But you Can face whatever comes your way. Many hugs and prefers to you.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Nov 2010 Posts: 128 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2010 Posts: 128 | hi lisa, i am reading your posts and very touched by your situation.. my father had 3/4 of his tongue removed amongst some other surgery, today was the first time he was in a store since October of last year.. his surgery was december of last year and he was afraid of looking "different" and afraid of the stares.. i told him he looked great and some people dont even look as good as him without the surgery! had to throw some humor in there :-).. you will pull through this.. i have learned through my father, that no, life will not be the same, BUT it will be the new "normal" life.. i am sorry you are going through this.. you will be in my thoughts and prayers.. stay strong!
nicki
Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
Painfree and rested 6/19/12
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hey there. Hope you are doing OK. Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
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