| | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | I woke up this morning with a huge (quarter size) white patch on the flap side of my tongue, it is thick leathry and solid. I have had thrush like stuff, that I could brush off with my toothbrush. This wont scrape or brush off, and it seems as although the solid white patch is quarter size, the whole area doesn't look quite right. What should I do. I am not scheduled for a checkup until mid July. Is leukolakia dangerous for us OC surviors. That is what it looks like to me.
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
| | | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | And I should add that the whole flap feels swollen and more stiff than normal.
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
| | | | | 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 | Call dr. and go and see him - forget July - you could wait but why stress yourself out? It could be anything - so don't immediately think recurrence but if something doesn't look right - you know best - have it looked at ASAP. Hugs and try not to panic!
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 2009 Posts: 177 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | Well the good news is that as fast as it came on, just as quickly it is going away. I must have injured it or somehting. Will I ever not panic.....probably not. I hate this disease! Thanks Cheryl for responding so quickly.
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
| | | | | 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 | That's awesome!!!  good news is the best!!! Hugs - I know the feeling of panic!
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 | Good news, but keep an eye on it. Trust me - these doctors are very used to seeing patients between appointments and should you see it come back up - get to the doctor.
We are always here for you when you are feeling anxious. Always. Glad to hear its going well.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Donna, you are so right about the Drs. Anytime I have called at a decent time , I have been told to come right in to see the DR. Not any tomorrows but right nows.
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
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