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Leukoplakia? #199249
10-13-2019 04:47 PM
10-13-2019 04:47 PM
Joined: Aug 2019
Posts: 3
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Ssl Offline OP
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Ssl  Offline OP
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First time around I didn’t get answers apparently because either I said I have anxiety or because I wasn’t diagnosed..I don’t know which. The white spot still persists on the lateral border on the back of my right tongue..it’s more on the floor of my mouth than the tongue. It’s very white and for the past few months the tissue surrounding the spot is red more often than not. Not erthyroplakia red, but just increased blood vessels in the area. It’s not red all the time but more than half. I figure this must be no good. I am going to have a biopsy on Wednesday and I fear it’s the beginning of the end. I really hope I’m wrong but the redness is scary. That area also seems a little swollen too..it is hard to tell. Still doesn’t hurt but I can’t find anything else this can possibly be besides the big c. Maybe then I’ll get a response when I post. I’m too young for this and did nothing to warrant this. I’d almost rather stand in front of a bus then continue down this path. It doesn’t ever seem to end well. I’m scared and alone and feeling like no one cares.


Sam
Re: Leukoplakia? [Re: Ssl] #199250
10-13-2019 08:01 PM
10-13-2019 08:01 PM
Joined: Jun 2019
Posts: 46
San Antonio, Texas
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Mokie Offline
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Mokie  Offline
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Joined: Jun 2019
Posts: 46
San Antonio, Texas
So sorry to hear that your so frightened. As some very smart person told me... “It’s not cancer till they say it is”. Your doing the right thing to get it biopsied. That’s the only way to know for sure. Oral cancer is not a death sentence as you can well read on this site. There are many survivors and the earlier it’s caught the better the outcome. I can relate to your fear as we all have felt that and been there maybe more times than once. People on the forum here are here to support you when you need us. So sorry you didn’t get a response the first time. Life and treatments get in the way and we can’t get to this site as often as we would like. Best of luck with your biopsy and please keep us updated. We’re here for you.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: Leukoplakia? [Re: Mokie] #199257
10-15-2019 04:08 PM
10-15-2019 04:08 PM
Joined: Oct 2016
Posts: 281
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DanielleO Offline
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DanielleO  Offline
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Joined: Oct 2016
Posts: 281
Sam,

I wouldn't let the internet make you crazy trying to diagnose yourself. The best thing to do is get a biopsy done so that they can determine what it is. I too am a worrier by nature and worry about my mom day and night. Please keep us updated on what you find out.

Take care,
Danielle


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
Re: Leukoplakia? [Re: DanielleO] #199482
11-20-2019 12:03 PM
11-20-2019 12:03 PM
Joined: Nov 2019
Posts: 2
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ChrisCQ Offline
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Sam,

I hope you've had it biopsied by now (or have made an appointment to).

Bottom line is you can't tell until they biopsy it.

My 4mm tongue ulcer came back pre-cancerous (thankfully only that). But now we are watching it closer.

Ideally the biopsy would come back with no dysplasia or other abnormalities and you just forget about it.

Rule of thumb for any oral lesion that doesn't heal in 2 weeks: BIOPSY IT.

No other way of knowing what is going on. My oral surgeon didn't expect any abnormalities on pathology report. Now it is "a thing" to monitor and perhaps re-biopsy in future.

I was starting to get nervous as I had other medical stuff going on and the dentist that discovered my ulcer of my tongue wasn't super excited about the importance of getting it checked out, so I waited like 2 months to get the oral surgery consult scheduled. Then I discovered this website and was like, that was super dumb to delay getting it biopsied. My wife had face skin biopsied and it came back pre cancer lesion of the squamous cell carcinoma (SCC) type, and I heard that was no big deal, so I thought a little tiny tongue lesion would be the same. Uh WRONG. A tiny tongue / oral cancer is something you most definitely want to catch early, and oral SCC is kind of like the oral equivalent of melanoma of the skin---not something you want to mess around with and something you want to catch as early as possible and treat as early as possible.

There is a good chance it is totally harmless, but something you want to rule out early.

Hope it turns out well for you.


Moderate Epithelial Dysplasia of right lateral tongue
Re: Leukoplakia? [Re: ChrisCQ] #199557
12-02-2019 04:21 PM
12-02-2019 04:21 PM
Joined: Aug 2019
Posts: 3
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Ssl Offline OP
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Joined: Aug 2019
Posts: 3
I’ve never had the biopsy done or went back for a follow up. I can’t bring myself to do it...I don’t want to lose half my tongue, be financially wrecked, and potentially die. I just don’t have it in me. It doesn’t hurt me, it never has. It does concern me that it seems to have surrounding redness more often than not but there is no bump or lump, just a flat white spot. At this point, I will probably wait until it causes an issue before I deal with it. The outcome seems pretty bad either way so why put myself through hell before I need to. I realize how irrational that all sounds but I’m terrified and I don’t have a support system and I need to work to support my kids...


Sam
Re: Leukoplakia? [Re: Ssl] #199562
12-03-2019 11:57 AM
12-03-2019 11:57 AM
Joined: Nov 2019
Posts: 3
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Bakergirl Offline
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Hi Sal
I just want to say I understand. I have very bad tonsils and ear ache on one side along w throat pain and other tonsil cancer symptoms. I have had multiple cultures and antibiotics. Cultures come back negative and antibiotics don’t help
I live with my sister who has terminal metastatic breast cancer. I am 54, single, commission job with zero savings or 401k etc
I go Thursday for tonsil biopsy and am frightened about it. I have bad health ins and don’t know how I would afford even 1 treatment let alone all that cancer entails. Plus the feeding tube, weight loss etc
And I have 3 grown kids who I want to see my grand babies with.
So just know that someone in Florida is keeping a good thought for you.
bakergirl


Kind regards,
Heidi
Re: Leukoplakia? [Re: Ssl] #199564
12-04-2019 09:26 AM
12-04-2019 09:26 AM
Joined: Nov 2019
Posts: 4
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kalabio Offline
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A Biopsy take no more than 5-10 minutes and they only take a very very small piece,you won't even notice it ... if you don't do the biopsy you will be anxious all the time and you'll never be able to live a normal life
the majority of biopsy come back negatif for cancer
If I was you, i would see an ent,schedule a biopsy and get the result within some days


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