| Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Hi everyone. I like to know more from loved and respectable members here who have opted to go for free flap option followed after tongue resection(either by personal choice or by doctor's recommendation). Don't want much of details, but like to get overall outlook after opting this choice in terms of; 1. Age 2. Year Free Flap was done 3. Your overall experience (positive/negative), Please use one of the choice only. 4. Three to four Positive things (usefulness) 5. Three to four negative things (Side effects) 6. Regret your decision to opt for free flap option?
I really will appreciate your little time if you can manage to answer these six questions in shortest way. Here is an example
1. 40 2. 2013 3. Positive 4. Functional, Helps in swallow, fills gap 5. No taste, hair on surface, No saliva 6. No
Thank you so much to all readers for your kind co-operation. And yes, anything happens happens for reason. Reason to start this thread is, I am in a box now, and need some real time feedback from members with Free Flap. I didn't see much about free flap on this forum and decided to toss a new topic for readers over a period of time.
Thanks once again... Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0 12/13: Biopsy and results 01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction Right neck dissection. 3/42 nodes positive and removed Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14) 03/14: 30 IMRT Appointments Started 3/17 (No CT) 04/14: Radiation treatments completed 07/14: PET - All Clear | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | 1. 60 2. 2012 3. Positive 4. Fills gap. Aesthetic . 5. Non functional. Did have hairs, but no longer. 6. No
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | 1. 39 2. 2012 3. Positive 4. Aesthetic, keeps the old tongue in the right place, has adapted to work with the old tongue for speech and swallowing, starting to get feeling. 5. Partly functional, no hair (ew), no saliva but that would have been the case regardless. 6. Absolutely no regrets
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Everyone,
I am glad to add this topic for readers. Thanks all for responses. Hoping more responses being added here over a period of time. To me this is a trend analysis topic that helps others to make aware, educate and helps to make decision on this opportunity.
Thanks Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0 12/13: Biopsy and results 01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction Right neck dissection. 3/42 nodes positive and removed Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14) 03/14: 30 IMRT Appointments Started 3/17 (No CT) 04/14: Radiation treatments completed 07/14: PET - All Clear | | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Tina,
Thank for your response. I sent you over PM as you requested, Please let me know you had a luck to find me on FB. You can send me PM also if you wish.
Thanks Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0 12/13: Biopsy and results 01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction Right neck dissection. 3/42 nodes positive and removed Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14) 03/14: 30 IMRT Appointments Started 3/17 (No CT) 04/14: Radiation treatments completed 07/14: PET - All Clear | | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Thank you so much for your time and active participation on this topic. Hope you must have joyful year and pink health.
Have fun.. Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0 12/13: Biopsy and results 01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction Right neck dissection. 3/42 nodes positive and removed Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14) 03/14: 30 IMRT Appointments Started 3/17 (No CT) 04/14: Radiation treatments completed 07/14: PET - All Clear | | | | 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 | 1. 46 2. 2011 (February 4) 3. Positive 4. Looks real, prevents crap from getting underneath, aids in speech - I too can swallow with no problem and I can feel as well with it. 5. It's still a little big for the space so I have to make sure I don't bite it (chew only on my good side) dr. Will revise when I am ready. Other side effects only if I've talked a lot all day- but I get a small lisp later in the evening sometimes (not often though) my real tongue gets tired as it has to work for both sides. 6. No regrets at all. 
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 2013 Posts: 37 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2013 Posts: 37 | 1. 43 2. 12/26/13 3. Positive 4. Now that the swelling is down I was able to eat pizza last night and steak tonight. I still sound like I have something in my mouth when I talk but every day is getting clearer. 5. No feeling yet or maybe never where the flap is. I also have to scrape under the tongue to make sure food is not lodged in between...I've been using the water swishing method and seems to be working well for the most part.
6. NO REGRETS! AMAZING HOW THEY ARE ABLE TO DO THIS!
SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
| | | | 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 | Fish... the sensation will come back slowly - hopefully - nerves take a long time to regenerate, and don't always recover fully but it does improve over time. hugs
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: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | I am glad to introduce this topic. Monday, 1/20/14 I am set for 8-10 hour surgery. Will access laptop & iPad after a week. So will update all my dear fellow members here on Jan28 afterwards.
Thank you so much all of you (By Heart) for your time and support to date. Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0 12/13: Biopsy and results 01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction Right neck dissection. 3/42 nodes positive and removed Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14) 03/14: 30 IMRT Appointments Started 3/17 (No CT) 04/14: Radiation treatments completed 07/14: PET - All Clear | | |
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