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#195589 - 01/09/18 10:25 PM Sore on tongue for 10 years  
Joined: Jan 2018
Posts: 1
butako Offline
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butako  Offline
Member

Joined: Jan 2018
Posts: 1

This is a weird one for you all smile For about 10 years I had a small red and sometimes slightly painful sore on my right tongue. I've seen a doctor, and dentists, and the best diagnosis I got was Canker Sore. For a while, sometimes worse (caused by food), sometimes it got better for months too. Sometimes pain, sometimes none.

Recently, a patch turned White. So I saw a doctor again, and then specialist, and was told it could be cancer. To be more precise, the diagnosis was: "small area of homogenous
leukoplakia with some surrounding erythroplasia. This could well be a lichenoid reaction to the amalgam."

Well, I have just had a Biopsy and am now awaiting the results.

The puzzle for me, is it ever heard of for a 10 year sore on tongue?! From what I've read on the internet, such sores generally progress to cancer aggressively. Any insights/experiences would be appreciated?

The specialist remarked I would've been dead by now if untreated cancer, he then rightly ordered the biopsy and wants it checked.

Thanks

#195590 - 01/10/18 12:56 AM Re: Sore on tongue for 10 years [Re: butako]  
Joined: Jan 2018
Posts: 15
BryanB Offline
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BryanB  Offline
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Joined: Jan 2018
Posts: 15
Gun Barrel City TX
In my time I have never heard of such a thing. The doctor was right...cancer takes over faster and more aggressively. It sound like you've kept an eye on it all these years. If it does turn out to be pre-cancerous or cancer you've caught it early, which is the best defense! Sorry I had no definite answer for you but would like follow your story. Let us know when you find out. With everyone here I sure someone will chime in.

Bryan


15 year survivor of tonsil cancer. In 2002 I was diagnosed with Stage III squamous cell carcinoma. I had a left neck dissection, teeth removed, and 38 radiation treatments. In 2015 I received a feeding tube and in 2016 a trach, both due to radiation side effects. But I'm happy to say that life has been good to me!!
#195591 - 01/10/18 02:33 AM Re: Sore on tongue for 10 years [Re: butako]  
Joined: Jun 2007
Posts: 10,155
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,155
PA
Welcome to OCF! Im very sorry you are going thru this. Hopefully whatever your sore turns out to be not cancerous and that its easily fixed.

Please do yourself a huge favor and avoid Dr Google like the plague. The things you have written are NOT correct!!! It could be any number of things besides cancer. Leukoplakia does NOT always turn into cancer. Also, cancerous tumors do not come and go and sometimes get worse then get a little better. Thats not at all how a cancerous tumor presents itself. Everybodys different and will respond to things in their own unique way with medicines, procedures, recovery, etc.

Any sore a person has inside their mouth that does not heal on its own within 2-3 weeks should be checked by a professional. By professional, I mean an ENT who specializes in treating oral cancer patients. Dont panic by my advice to seek out someone who specializes in oral cancer. You do NOT want to get checked out by an ENT who primarily puts tubes in childrens ears. If a biopsy would be necessary, that type of ENT should have seen many spots/sores/etc both cancerous and non cancerous and have the experience to know what needs a biopsy and what doesnt. Even the most experienced doctors still must do a biopsy and have it examined by a pathologist before knowing for certain what something is. Try your best to ignore what the doctors told you about it being cancer. At this time, its just a guess. Right now, until that biopsy comes back with a cancer diagnosis you have NOT been diagnosed with anything. Do your best to stay super busy with positive things until you can get the test results. By staying busy it will help the time pass easier.

If you use tobacco in any form, drink alcohol or use mouthwash that contains alcohol please stop using those things right away. Its possible your sore is there from being irritated by something.

Hang in there and please keep us posted how your results turn out. Hopefully its not cancer but if it would be you are in the very best place to get info and support. Good luck!!!


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
#195742 - 02/18/18 09:16 PM Re: Sore on tongue for 10 years [Re: butako]  
Joined: Dec 2017
Posts: 14
Crapshack Offline
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Crapshack  Offline
Member

Joined: Dec 2017
Posts: 14
I don't want to scare you but I had the same thing for around the same length as you, and it was dysplasia for the longest time before it did eventually turn into cancer. I had very uninformed dentists and doctors who thought I'd be immune to oral cancer since I was young. So I would be very diligent in getting it removed if I were you.

Last edited by Crapshack; 02/18/18 09:17 PM.
#195744 - 02/19/18 02:43 AM Re: Sore on tongue for 10 years [Re: butako]  
Joined: Jun 2007
Posts: 10,155
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,155
PA
Most often dysplasia does NOT turn into cancer. Yes, it can happen but the odds are against it. Only about 10% of those diagnosed with dysplasia will have it turn into cancer.


Main OCF Site, premalignant lesions


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
#195746 - 02/19/18 06:24 PM Re: Sore on tongue for 10 years [Re: butako]  
Joined: Jun 2013
Posts: 241
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 241
alabama
I've not had experience with dysplasia, but my cancer did start with a sore. Since it was causing significant pain and discomfort, and causing eating difficulties, my doctors took me seriously right off, though none of us thought cancer. The ENT who did the surgery did so mostly because, as he said, sometimes a sore just needs to be cut out so it can get a fresh start healing. This is not a bad plan and something worth considering as an option. But he was also wise, and did biopsies as he went along, and that's how we discovered it was cancer. He kept trimming and getting it checked, till he had thoroughly clear margins (which meant the surgery went longer than we thought, but I'm not complaining about that part!). So in my case, we were merely treating and dealing with the sore, which was problematic. Cancer or not, it deserves dealing with; you shouldn't have to be in pain all the time.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery

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