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#174498 11-25-2013 12:38 PM
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Hi everyone,

I am 26 years old and have had four white lesions on the surface of my tongue towards the tip for about 2-3 years. They haven't caused me any discomfort or grown at all and they are all about the size of a pencil eraser. I was referred to an oral surgeon by my dentist and went in today. She pushed on one of them and it was tender and she said the tissue felt different so it should be biopsied. I don't smoke and rarely drink and my last health checkup in May was normal. Has anyone experienced this type of situation? I have school finals soon, so I was not able to book my biopsy until after and am a little concerned.


Ashley, 26 years old, female, biopsy 12/16/13
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Hi Ashley - sorry no one has replied to your post yet. Most of us start off in Introduce Yourself forum, so that's where we look for new members first. I will PM Christine and ask her to move your thread to there, and you will get lots more attention and answers.

First off, welcome to the family. It's a big one, very supportive, very caring. You will get the answers to your questions. I'm sure someone here has your same symptoms. Unfortunately I am not him.

I agree getting the biopsy is the right thing to do. They can look, they can touch, they can measure how sensitive it is, but nothing is as definitive as a biopsy result. That is the gold standard, and it's what you want to get done. Dec 16th is okay, that's not too long to have to wait. After all you've had these lesions for what a couple of years now.

Now, about that 2-3 year period with tongue lesions, I'm a little surprised your dentist hasn't suggested biopsy before now. Anything that doesn't heal within 2 weeks should be seen by a doctor. It seems to me there are many dentists who don't yet know how to do a proper oral cancer screening. After studying the info on this forum you will become an expert on them.

So, get your finals behind you, then get yourself a spiral notebook to write down all the many questions you are going to think of. Take that notebook with you to all your doctor appointments, so you can remember all the questions you want to ask your doctors, and write down the answers as it can all get confusing quickly.

I'll stop now, you have enough to do already.

Welcome Ashley, we will help you get through this. They helped me immensely.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Ashley, waiting a couple weeks will not change anything. A biopsy will determine exactly what you have in your mouth. It could be any number of things, hopefully its not cancer.

Try not to worry too much over this. Its been there for a couple years and hasnt caused you any problem. If it was cancerous by now there probably would have been some growth or health problems by now. Be prepared to wait about a week after the biopsy for the results. Thats why I am advising you not to fret over this, it will take several weeks until you know the results and you have other things (finals) to focus on. Besides, worrying has never changed a test result.

Wishing you all the very best with this. Please let us know what it turns out to be.


PS.... Tony its already been moved smile


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
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Thank you Christine and Tony! That puts me a little more at ease. I hadn't been to the dentist in about 8 years because I never had coverage and put it off for so long because I haven't had any issues with my teeth. But through my school they have a very good student plan with a dentist on campus so I decided to take advantage of it and asked her about the lesions then.


Ashley, 26 years old, female, biopsy 12/16/13
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HI there... okay I am going to go against the flow here. I don't want you to worry - however you should have it biopsied asap. I am saying this for two reasons. Firstly the sooner you know the better it will be. Assuming it's nothing (which is entirely possible) knowing sooner will put your mind at ease. Secondly, the previous lesions you've had (the ones that have been there a while, could very well be nothing). The tender one - as your dentist said - should be looked at. And in my opinion the sooner the better. So I would push to get in before hand, have the biopsy done - do your exams and forget about it until the results come back.
See my sig line - this will somewhat explain why I am pushing you to deal with it now. hugs and best of luck. PS if nothing else please call the person doing the biopsy and ask to be put on a waiting list. That way if there is a cancellation - they will call you. take care.


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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Hi Ashley, It could be of any of the hundreds of oral conditions, other than cancer, maybe a raised papillae or taste bud, thrush, and thrush, a candidiasis, can be combined with other oral conditions like leukoplakia candidiasis, etc. Oral conditions can transform to other conditions, like systemic infections, cancer, although there are different percentages, some that likely or unlikely to occur. Maybe see an ENT who specializes with head and neck cancer, who may biopsy or send you to the appropriate doctor for further care.

Good luck with everything.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Thanks for the support everyone! Just talking about it helps calm the nerves a little, and this is a great community! I have my finals over the next two weeks and then I get the biopsy done right after. I decided to push it till after finals so I wouldn't have trouble when giving my presentations since I will have a couple sutures that might make it difficult to talk. I'll post an update once I have the procedure done. Hope everyone has a great Thanksgiving!


Ashley, 26 years old, female, biopsy 12/16/13
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I hate to argue, too, but I waited. Twice. And the first was cancer that grew in the interim, and now I have a recurrence. Like you, I have no risk factors or behaviors. Please, go get checked. Your health trumps your finals. Surely your teachers will understand.


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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I had my biopsy done today, very painful and four stitches. I'll get the results in a couple weeks but the doctor said it doesn't look like anything to be worried about. Thank you all for the support!


Ashley, 26 years old, female, biopsy 12/16/13
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Congratulations, Ashley, you made it through finals AND a nasty biopsy! Now you're free to enjoy a much earned rest and some good holiday cheer, especially with the reassurance from your doc.


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
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Awesome... Hopefully he's right!!! Let us know


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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Good luck with the results.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Congratulations, with a word of caution.

Please ensure that the doctor doing your biopsy, and the people who did the pathology analysis and report, are experienced in detecting cancer.

Six years prior to my initial diagnosis, I noticed a lump under my right jaw-bone, not far from the joint. I went at once to my family doc and asked his what the story was. He didn't know, so he sent me to a prominent ENT in town for a needle biopsy.

Neither the ENT nor the people doing the pathological analysis had significant experience with detecting cancer, and 6 years later, I had the lump removed surgically. Naturally, the surgeon sent the lump for analysis, and the analysis was done at the same lab as the first. Fortunately, the surgeon was not satisfied and sent it out for a second opinion and the cancer was found.

In the six year gap, it had become stage IV, and later IVc (distant metastasis); the later being the one you don't want as it's incurable.


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
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Thanks for all the support everyone! I got my results and they said it was fibrosis with myofiber atrophy, mild hyperparakeratosis with superficial bacterial colonization and mild chronic mucositis (thats what the paper they gave me said). She said nothing to worry about, which was a relief. It healed really quickly but now my tongue looks the same as before with the white patches, but they are all a lot thicker than before. When she did the biopsy, she took a big chunk and removed two of the four and I could barely see the other two. I was hoping they would go away so i'm a little bummed they are back worse looking than before. Has anyone experienced this? Is there any other options to make them go away, I can really notice them now and they are kind of uncomfortable. Thanks all!


Ashley, 26 years old, female, biopsy 12/16/13
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What did she say to do?

This is NOT normal and your tongue should not look like this now or in the future.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I'm going to agree. I would take a wait and see approach somewhat. Go back every few months until they figure out what is going on... It is likely it's nothing I mean nothing unusual - clearly it's something. But with anything suspicious it's good to stay diligent. I had two biopsies. With a large gap in between. A negative biopsy can give you a false sense of security, as I am certain after my second last biopsy, I had cancer. The third one was a charm and yes, it was cancerous. Had the dr. told me he wanted to follow up with me every few months, I would have been there as suggested. However - he said it was nothing, stupidly I believed, and 18 mos later I get a stage 2/3 dx.

hugs and take care.


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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She didn't really say much to me, just that it was fibrous tissue and nothing to worry about. I asked her if my white patches would come back and she said maybe. She didn't say anything about follow ups. She didn't seem to think I needed to worry about it anymore, it was just weird to me that the spots came back thicker than before and there's no explanation for it. Do you think I should have her look at it again?


Ashley, 26 years old, female, biopsy 12/16/13
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I would get another opinion. All to often we see things like this end up as cancer. Certainly I'm not a doctor but if it was my mouth I would keep getting appts until it made sense to me.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I'm going to agree with david. Sometimes age and no precursors means the drs. kind of just blow you off. My first one did. He just assumed because I was healthy with no bad habits that OC couldn't happen to me. WRONG.
Anyway. I would want a reasonable explanation for what is going on. And I would keep an eye on the area for pain and redness. A lot of cancers are painless. However, because the tongue is very nervy, and muscular, it can become painful quickly if it is a tumor. Hugs.


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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