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Severe Epithelial Dysplasia #200233
07-02-2020 07:35 PM
07-02-2020 07:35 PM
Joined: Jul 2020
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Mi56 Offline OP
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Mi56  Offline OP
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Hello everyone,

I'm relatively young (33), in decent shape, nonsmoker, and social drinker. I found a white patch under my tongue back in December by my Dentist dismissed it. Still here and had a new dentist biopsy it and it came back as severe epithelial dysplasia. I'm scheduled for an excision in August to ensure clean margins.

Has anyone else gone through this? I'm nervous and unfortunately don't have anyone I can talk to. I tried to Google it, but that feels like going down the rabbit hole and is somewhat terrifying.

Re: Severe Epithelial Dysplasia [Re: Mi56] #200234
07-03-2020 02:34 AM
07-03-2020 02:34 AM
Joined: Jun 2007
Posts: 10,498
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ChristineB Offline
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ChristineB  Offline
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Welcome to OCF, Mi! Im sorry you arent finding more info about dysplasia. It is fairly common and Im sure if you asked your new dental practice staff they will have a wealth . Fortunately for you it is NOT cancer or even a pre-cancer! In your search for more info, you may find many other websites that arent vetting their info. Unfortunately all this incorrect info gets passed off as facts which doesnt help anyone.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Severe Epithelial Dysplasia [Re: Mi56] #200236
07-05-2020 04:25 PM
07-05-2020 04:25 PM
Joined: Aug 2019
Posts: 9
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Ssl Offline
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Ssl  Offline
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Joined: Aug 2019
Posts: 9
I’ve had a white patch under the side of my tongue in back for over a year. I haven’t seen a dentist bc I don’t have dental insurance but I have seen an ent. The ent thinks it’s due to friction & says not to worry, but now I don’t know..little scary. I don’t smoke or drink either. Is your white spot flat? Mine is. How big?


Sam
Re: Severe Epithelial Dysplasia [Re: Mi56] #200239
07-07-2020 06:51 PM
07-07-2020 06:51 PM
Joined: Feb 2020
Posts: 39
Michigan, United States of Ame...
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DavidUofMsavedMe Offline
Contributing Member (25+ posts)
DavidUofMsavedMe  Offline
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Joined: Feb 2020
Posts: 39
Michigan, United States of Ame...
My Squamous Cell Carcinoma grew from a white patch on the bottom of my tongue. The first ENT I saw diagnosed it by sight as oral lichen planus. He told me not to worry. Two years later it became cancerous. Any patches that don't go away should be monitored closely in case they become cancerous like mine did.


The number of people involved in my care (@ a CCC) is humbling. Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
Re: Severe Epithelial Dysplasia [Re: Mi56] #200241
07-10-2020 06:40 AM
07-10-2020 06:40 AM
Joined: Jun 2020
Posts: 1
Idaho
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ShyGuy Offline
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Idaho
I am pretty young too (30). Had a leukoplakia on the right side of my tongue removed three weeks ago. The surgery was an outpatient procedure and took less than an hour. I lost a few pounds and talked with a lisp for a few days, but within less than a week I was back to work.

Google is extremely unhelpful. I drove myself crazy reading dozens of contradictory studies. The good thing is, you caught it early. It seems to me one is never quite out of the woods, but as long as you and your doctor keep an eye on it, it is manageable.

Reading the stories on this forum gave me strength and hope and helped me stay positive. If people could endure big surgeries, radiation, and chemo, and go on living, I could stand to lose a little chunk of my tongue.


Age 29 - Quit dipping 4/15/20
Small (1 - 2 cm) white mass rt lat tongue
Tongue resection 6/17/20
Biopsy dx'd low grade leukoplakia
Re: Severe Epithelial Dysplasia [Re: DavidUofMsavedMe] #200255
07-14-2020 05:12 PM
07-14-2020 05:12 PM
Joined: Aug 2019
Posts: 9
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Ssl Offline
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Ssl  Offline
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Joined: Aug 2019
Posts: 9
Did your white spot change or grow before the tumor started growing in that area?


Sam
Re: Severe Epithelial Dysplasia [Re: Mi56] #200257
07-16-2020 05:50 PM
07-16-2020 05:50 PM
Joined: Sep 2018
Posts: 17
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Sara G Offline
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Sara G  Offline
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Posts: 17
Hi- I had this surgery for the same reason almost two years ago. I was very nervous but it ended up being fine. If you want to talk more, I’m happy to- just shoot me a direct message. Best wishes to you!


42 years old, past smoker and social drinker
Lesion on left lateral of tongue identified and biopsied August 2016
Incisional biopsy outpatient surgery scheduled October 31, 2018
Re: Severe Epithelial Dysplasia [Re: Mi56] #200288
07-27-2020 04:18 PM
07-27-2020 04:18 PM
Joined: Jul 2020
Posts: 2
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Mi56 Offline OP
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Mi56  Offline OP
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Joined: Jul 2020
Posts: 2
Hi everyone,

Thanks for the replies. I have an appointment next week with an ENT Surgeon to use a CO2 laser to remove the area with clean margins. Hopefully that will be the end of this! Google is unhelpful and downright scary. Either way, sounds like I've got this relatively early.

I've seen other threads that talk about this recurring in people. I'm hoping I luck out and do not experiences recurrence any time soon. I'm giving up alcohol except for extremely special occasions, drinking more green tea, and doing whatever I can to improve my health, so hoping that helps!

Last edited by Mi56; 07-27-2020 04:54 PM.
Re: Severe Epithelial Dysplasia [Re: Sara G] #200428
09-23-2020 08:37 PM
09-23-2020 08:37 PM
Joined: Sep 2020
Posts: 5
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Mrs. Karl Offline
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Hi Sarah,

Read your post. I had a big chunk of my tongue removed July 31 and had mild and moderate dysplasia. Doc at farber couldn’t take more or i would have significant defect of tongue. Wants to observe and then possibly laser rest. Problem is, it has been growing back near incisions line and tip of tongue. Did yours grow back? Did you have clear margins? I am
Super worried and going for 2nd and 3rd opinion at NYU snd MSK in ny.

Would love to hear if your surgery was successful.

Thanks


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