| | Joined: Dec 2009 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | OP  "OCF Down Under" Supporting Member (50+ posts)
Joined: Dec 2009 Posts: 63 | Hi prob only relevant to those who haven't had rads/chemo... I'm 7 months post surgery (almost half tongue replaced with some arm) and am at times beyond amazed at how well it works... Every now and then though, its as if something makes it a little more swollen and i get a bit thick-tongued again. Only lasts a day or two, and probably only slightly noticeable in speech, but def something there... Anyone else with a similar history to me experience this? My plastic surgeon said 12 months for all swelling to go completely (or as much as its going to), so imagine it will back off after this time... Am curious whether its something im eating or drinking triggering it...(red wine is my current guess, though think i need to do some more experimenting  )
stage 2 scc in left oral tongue. 32 at dx
removed 21/12/09 plus left neck dissection and upper arm flap.
clear pathology 24/12/09
non-smoker
active footballer/surfer
social drinker
lives stress-free!
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Jon,
Congratulations of your recovery.
Experimenting with wine and food is something many of us can only dream of.
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Glad your flap works well. I had my surgery 9 months ago and yes, my speech is up and down. The flap doesn't swell but the tongue is stiff sometimes and I'm very conscious of it. It looks pretty gross and I'm hoping there will be some improvement over time. Like you though, I feel fortunate to have come through with such good swallowing and speech.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Nice to see you post again Jon and it seems you deserve congrats. Our problems seem never ending , but we are alive and typing with good thoughts.
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: Sep 2009 Posts: 177 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | Jon, I have that problem too. It seems to me that evening is the toughest time. I do pretty well, but after work my speech seems less audible. I am about 9mos out.
Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
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