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#186185 10-24-2014 06:05 AM
Joined: Jan 2014
Posts: 14
WendyT Offline OP
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Joined: Jan 2014
Posts: 14
This is the first time I have been on here since February. A few of you might remember me. I had surgery on my tongue a couple of times because they wanted to take samples of a painful Leukoplakia I had had for years. The biopsies came back okay. My last surgery was in 1-2014. The last time I saw my ENT in Virginia (I moved to Illinois in July) was in June. He seemed to think that everything looked okay with my tongue, but that I should find another ENT here who can monitor it on a regular basis. Well I FINALLY saw him yesterday for the first time. I wish I had done this sooner, but I have a severely disabled child who requires therapy -a lot to deal with there. To make a long story short, the new ENT said he thought that my tongue looked okay, but that one of my tonsils was TWICE as big as the other one!! It does not seem like a coincidence to me that it's on the same side of my mouth as the Leukoplakia, but the doctor said he thought it was "unrelated". I am waiting for a CT scan to be scheduled, and hoping they don't find anything that needs to be biopsied. I was very lucky those last couple of times, but now I'm not so sure.
In the middle of the night, I remembered that about 6-7 weeks ago I had a sore throat that was on one side only ....probably that side. I remembered thinking how strange it was that it was on one side, but never made any connection there. After all, my tongue didn't seem to be affected. I was tested for Strep, and it came back negative. The doctor gave me an Antibiotic, thinking that I might have a virus. My mouth and throat have felt okay most of the time - although the right side of my mouth has felt kinda weird for a long time. What I mean is that it's been a long time since I have really known what a normal mouth feels like. I'm sure that many of you can relate to that.

Joined: Jan 2013
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
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Hi Wendy,

You are a strong soul, I can tell. It is a tough road for some of us, dealing with the burdens of daily living in addition to health worries. Keep a positive attitude and remember it is not cancer until proven via biopsy. You been there before so you know the drill; no reason to think otherwise this time.

Best to you,
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
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"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
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Good luck with this Wendy. Sounds as if you are doing all the right things being monitored and so on. I had lichen planus which is like leuoplakia in that it causes non-cancerous lesions which need to be watched. I haven't had a normal mouth for decades which is why I find it hard to monitor myself. A lot of it is numb now but in the past there was always a sore spot somewhere.

Thinking of you. I feel that you will be all right.


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.

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