| | 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  | | |
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