| | Joined: Sep 2013 Posts: 5 Member | OP  Member
Joined: Sep 2013 Posts: 5 | I'm headed to a CCC on Tuesday, and am feeling rather uninformed. Though I've printed all my after-visit summaries and feel slightly more informed about my own biopsies and DX, I'm not at all sure what I should ask the doctors.
Advise would be helpful and very appreciated!
Last edited by ChristiP; 10-26-2014 08:13 PM.
'09 tongue/sensitivity acid/spice -R side biopsy shave neg
'10dec painful white patch-R side tongue
'11 3 biopsies, Stage1 SSCA-R side tongue, no further treatment by ENT
'12 biopsy-R side tongue, no carcinoma-PET normal
'13 2 biopsies-R side tongue, mild squamous dysplasia-severe swelling/virus
'14jun11 R side tongue biopsy-low grade dysplasia-tissue growth out of wound-tenderness/sensitivity
'14oct-ENT refer to CCC-scheduled for 28oct14
| | | | | 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 | I am not sure what they will want to do other than remove the tissue and wait for pathology - yet again. Unless it's proven cancer doing something more invasive might be overkill, though it is good to have it monitored what is causing the dysplasia might be a place to look. Is your tongue being irritated by say a molar? Sharp tooth? Have you had a recent cap? Filling? Possibly you are allergic to the amalgam ? Do you unconsciously bite the area? Eat something you are sensitive to? Habits? (Chewing tobacco? Heavy drinking? Smoking?) hugs and best of luck.
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 2013 Posts: 5 Member | | OP Member
Joined: Sep 2013 Posts: 5 | Thanks Cheryl. Yes, having one removal after another is anxiety producing but I can't do much to change it.
Due to migraine history I never smoked and rarely drink. But, I am a chronic mouth chewer and grind my teeth/jaw day and night. Working on that habit. DDS made a guard to wear when I sleep but I have a tough time with a gag reflex/thick throat issue. Makes it more difficult to use it.
With the tissue being puffy it rubs constantly and hasn't ever really healed.
MRI I had done on Sunday (yes Sunday) showed marginal increase in lymph node size.
New doc will review all tomorrow and I'll know what the next steps are.
'09 tongue/sensitivity acid/spice -R side biopsy shave neg
'10dec painful white patch-R side tongue
'11 3 biopsies, Stage1 SSCA-R side tongue, no further treatment by ENT
'12 biopsy-R side tongue, no carcinoma-PET normal
'13 2 biopsies-R side tongue, mild squamous dysplasia-severe swelling/virus
'14jun11 R side tongue biopsy-low grade dysplasia-tissue growth out of wound-tenderness/sensitivity
'14oct-ENT refer to CCC-scheduled for 28oct14
| | | | | 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 | Hopefully it's nothing but I was in the same boat. I am not a smoker or drinker (I mean NOTHING) and I'm a vegetarian. I had a bad tooth that continuously rubbed the area where I actually ended up having a tumor grow. Do what you can to prevent it now. No grinding no chewing etc... I know it's a habit but you need to try and find some way of stopping it. best of luck.
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
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