#89130 01-29-2009 06:26 AM | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Since it's not really cancer until the pathology report comes in, I am just "visiting" this forum. Biopsy today of a "lump" and then pathology report and ENT follow up next Friday Feb 6th. However, late yesterday I finally got a copy of my Jan MRI and the radiologist's conclusion: "The imaging findings are concerning (sic) for recurrence of left tongue neoplasm at the posterior left tongue and lingual tonsil ...."
The MRI also noted that my entire left side of the tongue had enlarged enough that it "...crowds the left posterior oropharynx" So my complaint to the ENT that "i have FAT tongue" is validated.
So while hoping for the best, but expecting the worst, what's the recovery rate, info etc involved in tongue surgery (assume partial glossectomy.
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2006 Posts: 114 | Can't speak for potential outcomes of your biopsy and/or resulting Tx options. But I wanted to say thoughts and prayers are with you as you have the biopsy and await the findings. -Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | it depends charm.rob had a partial glossectomy and it really didnt cause him any problem at all.The sutures dissolved by themselves and he had no speech problems at all.i think it depends how much of your tongue they need to take to get clear Margins.
good luck liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Charm I would agree with Cookey. It depends on how much of your tongue they remove. My first surgery they took just a small portion of the left side of my tongue along with the floor of my mouth and I was back to work 3 weeks post surgery. In retrospect that was a mistake since I was probably not ready.
This surgery I was in the hospital for 3 weeks, in a sedated state for 8 days of that and for the first two weeks I was home someone came by daily to help me out. Of course I had the additional mandible replacement and leg recovery.
I sincerely hope that you are not facing another surgery and that you just have a fat tongue. I will be thinking of you.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Steve, Patty. Liz
I am a little groggy from the anesthesia but want to jot off a quick thank you. The ENT surgeon told my wife that she thinks it is cancer and will need a partial glossectomy with a forearm flap. She estimated 10 days in the hospital but also wants to do a neck dissection due to the recent MRI and today's biopsy. My wife's very upset but it does help her to read replies like yours. She notes: well they had the surgery and they sound so nice so maybe it's not the end of the world time to take some pain pills and chill as the ENT excised not only the lump but took some punches from the base. thanks again. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Charm I am sorry that the news is not better. I was thinking today of your fat tongue and how long my ENT and I looked at an area that we decided was just being rubbed by my partial and decided not to biopsy it. It did not dawn on my until you were talking about your tongue that this may have been my tumor.
I am thinking of you and your wife and family. Stay strong and keep chillin'.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | 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 | I have had two partial glossectomies and now have about 1/8 of my tongue. I get by and am thankful for each day. You and your family can and will get through this surgery. I find it very interesting that in Canada the thigh is the preferred site for a flap while in the states it remains the forearm. Interesting.
Scary time for you but you will feel so much better when they actually do the surgery and get the treatment rolling. The waiting is the worst.
We're here for you - let us know when you know more.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | [quote]I find it very interesting that in Canada the thigh is the preferred site for a flap while in the states it remains the forearm.[/quote]
Some areas of Europe seem to prefer back or shoulder. It may also be a question of size -- My first flap was only for the front 2/3rds of the mobile tongue, so the wrist donor site was more than adequate -- However, my second flap was a total glossectomy, from tip to BOT, and required a lot more tissue (The scar on my thigh is ten inches long -- It would have been difficult to get that much tissue from my other wrist).
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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