| | Joined: Feb 2011 Posts: 4 Member | OP  Member
Joined: Feb 2011 Posts: 4 | Congratuations on 5 years. I had similar cancer and tongue reconstruction (4 years). The "new tongue" is much whiter than my normal tongue. You can see it when i talk. Do you have a similar issue and have you tried anything to help?
i was diagonosed with stage 2 SCC cancer August 2009 (at 39). 9/15/2009 I had free flap (wrist) tongue reconstruction and right side neck dissection 30+ nodes all neg. I had a Trach & ng tube - 14 days in the hospital. no risk factors. non smoker. HPV neg.
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hello Jennifer:
Welcome to the family as both a new member and as an experienced 4 year survivor. I'm sure you have as much knowledge to give others as well as the information you seek.
If you were originally congratulating someone else on making it to 5 years you will need to "reply" to their thread, and you can do that by going to the reply window after the last post in their thread.
You have obviously been reading the forum for a little while as you learned you needed and then wrote a nice signature describing yourself.
I don't know anything about tongue reconstruction, but others will be along soon enough to address that. In the meantime - welcome again to the family.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | 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 flap is lighter than my normal tongue too Jennifer. It does not worry me too much but I do remember a child innocently asking me about it when I laughed. I also have a white thin seam at the join! It was very noticeable in a family photo so I just Photoshopped to even up the colour  Gabriele
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Geez... stick your tongue out and wag it around... you survived... color is unimportant... mine is whiter as well... I'm not embarrassed about it - if someone ever asks me I take the opportunity to educate (no one ever has). The one thing I wouldn't like, is if it were hairy. Which thankfully it's not. I know a few people who have to deal with that after treatment is over and it doesn't sound like fun.. My donor site was the inside of my wrist... No hair there thankfully. But I know some people - men in particular - who've had their leg as a donor site... and yup... they have hair on their tongue... ;o)
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: Feb 2011 Posts: 4 Member | | OP Member
Joined: Feb 2011 Posts: 4 | All - thanks for the reply. You are right and i am fortunate to be a survivor. Thank goodness no hair  BUT if there were ever a way to tint that part of my tongue, i would do it.
i was diagonosed with stage 2 SCC cancer August 2009 (at 39). 9/15/2009 I had free flap (wrist) tongue reconstruction and right side neck dissection 30+ nodes all neg. I had a Trach & ng tube - 14 days in the hospital. no risk factors. non smoker. HPV neg.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Tattoo? (ouch???!!) eating lots of beets? I have no idea.
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: 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 | They used my upper thigh as the donor site for my first surgery and I do not have any hair on my tongue. I think that was a factor in the plastics people choosing to use that site. It certainly is easier to have a direct transfer from thigh to tongue as opposed to thigh to wrist, wrist to tongue. Good that they have the technology to have this option.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 |
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
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
