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#153996 09-02-2012 07:34 AM
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Hello all. I'm new here, and glad to have found this site. I'm a 35 year old active male. I had a really sore tongue a few months ago that lasted a few days, kind of like a canker sore. It went away so I ignored it. The problem is that the white patch associated with the pain stayed. I also noticed slight sensitivity to tooth pastes and similar things. I finally decided that it was weird that this patch hadn't gone away so I scheduled an appointment. The doctor set me up with a biopsy. He told me he was concerned because he felt a rough part in the middle, and was pretty certain that it would come back as "pre cancerous". Of course at my age and how health conscious I have been, this kind of blew me away. I'm still cconfused I guess. Although I've been doing some reading and see now that it is affecting younger people. Ugh. Anyway, any thoughts on what the doctor said? I don't have my biopsy until Tuesday the 4th, and I've been doing pretty good at staying positive, at least outwardly, and have been staying busy. If its been here a few months, at least that I've noticed, I guess I'm worried that its not just "pre cancerous", but full fledged cancer. Any thoughts/opinions would be appreciated, and I definitely plan on sticking around and giving updates! Thanks in advance.

DB7 #154002 09-02-2012 08:34 AM
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I am also new here and sure hope it is something simple. But what I have been told here is "it not cancer until the doc says it is". My sugestion find a ENT and get is biopsied ASAP. The more you know the better the out come.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
DB7 #154006 09-02-2012 10:18 AM
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Hockey dad is right - a biopsy is the only way to know for sure. It is affecting younger healthy people I'm not as young as you but read my info at the bottom of this post... I was darn healthy - your de. Sounds great. Most would have blown it off. Good luck and I do hope it's nothing,


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
DB7 #154016 09-02-2012 02:13 PM
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Welcome to OCF! Only thru a biopsy will you know for sure what you are dealing with. I know its not easy to deal with waiting but you are doing the right thing by staying busy. A sore could be all kinds of things besides cancer. Hope it turns out to be nothing serious!

Best wishes!!!


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
DB7 #154055 09-03-2012 11:35 AM
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I hope it turns out to be nothing either. I just know that after the doc looked at it, he seemed pretty certain that it was cancerous. Well he used the term "pre cancerous", but we'll see I guess. My biopsy appointment is tomorrow morning, but of course then I'll have the other week or so of waiting for the results...lol. Anyway, I appreciate the responses. Its nice to know there are others out there to help with answers.

DB7 #154056 09-03-2012 12:42 PM
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We had a 14 yr old girl in here that was really scared. That kid beat it and must be living a hppy life now. She was a toughy. Age has no meaning at all.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
DB7 #154066 09-03-2012 02:02 PM
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DB,

I know your nervous we all were when we played the waiting game. I hope it turns out to be nothing too, but IF it is cancer please go to a Cancer Center. They are up on the latest in technology believe me they are the best.

Hope everything turns out in your favor, keep us updated.

Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



DB7 #154068 09-03-2012 03:37 PM
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Hi DB - you've come to the right place for lots of the best and very latest accurate info, plus some very compassionate and helpful people to help you through the waiting and afterwards IF it is cancer. My son was only 33 when he had a sore under his tongue and he put off seeing a doctor about it for several months but he is doing fine now almost 6 years later. When you doctor said "pre-cancerous" it probably means that IF it is cancer that it is in a very early stage. Whatever the results of the biopsy, you will have all the support you want with everyone here. The waiting is absolutely the worst so it's good you have been keeping busy. Hope everything goes well. Let us know how the biopsy goes tomorrow.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



DB7 #154072 09-03-2012 04:37 PM
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Hi, DB, where in Ohio are you? I hope that your biopsy will be just fine, but if not, you have come to the best place in the world for support and advice. Good luck with your biopsy, and keep us informed.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
DB7 #154073 09-03-2012 06:27 PM
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Geez, I didn't even notice DB7 was another of us Buckeyes. I'm praying you are going to get good news. Too many of us get bad. Welcome to our home with the greatest family in times of stress.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Anne, thank you! Just curious, did your son have any symptoms to go along with the sore? Its great that hes doing fine, and that you come here to support others!

DB7 #154086 09-04-2012 01:46 AM
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Oh and i live in the Columbus area! Thanks for the latest posts. Ill check back after the biopsy. I think todays appointment is just the initial screening or whatever, as required by my insurance. Im not sure if the actual procedure is being performed.

DB7 #154090 09-04-2012 04:33 AM
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Good luck today and push to have the biopsy done ASAP. 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
DB7 #154122 09-04-2012 04:05 PM
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Another buckeye here. I agree get the biopsy ASAP. Speed means a lot. As if it nothing, no more worries. If is a problem, you found it as fast a possible. But I'm pulling for nothing.

Go buckeye.



Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
DB7 #154124 09-04-2012 04:52 PM
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Hockey Dad,
What part of Ohio are you living? I live in NW Ohio and was treated at the North Coast Cancer Campus in Sandusky, which is a branch of the Cleveland
Clinic.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
DB7 #154127 09-04-2012 05:55 PM
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Madison, 30 miles east of Cleveland. The Siedmen center has a campus in Mentor. Its only 12 miles from my home. And it is between home and work. I am not sure if the Clinic has a campus east of the main capus in cleveland.

I am tring to get opinions from both ASAP.

I have my pet scan tomorrow at UH Siedmen. I was asked to get a cd of the pet scan. The cleveland clinic wants a copy. I am not sure how to get this done.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
DB7 #154129 09-04-2012 06:43 PM
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Just tell them when they do it that you need a copy. They should be able to get you the disk pretty easily. The report is what takes a bit. You might want to just get it all together, but see what they say!
Good luck tomorrow!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
DB7 #154130 09-04-2012 07:00 PM
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DB7 - To answer your question, my son did have some pain associated with the sore that grew to a lump about the size of a small walnut. The doctor told him the reason there was pain is that the cancer was wrapped around a nerve and that most people do not experience pain with his type of cancer (squamous cell or SCC). Good luck tomorrow and stay in touch with us.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



DB7 #154136 09-04-2012 08:54 PM
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Ok i had my appointment and it went well. He commented on the size of the white patch and said that he agreed that a biopsy needed done. I got it set up for September 18th in the afternoon. He too asked me if i had any other symptoms. Not sure what symptoms i should be watching for. Doing my best not to do the internet searching deal, choosing rather to rely off the information on this site, and from you all. Ill keep you posted.

DB7 #154142 09-05-2012 03:50 AM
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It's good you have your biopsy set up. Maybe you could see if they would reschedule a little sooner? For me, waiting even one day was excruciatingly stressful. You could ask them to let you know if they have a cancellation and can get you in sooner. If your stress level is high, tell them about that, too. When my son was scheduled for an appointment with the ENT for two weeks away, I was in such an anxious state I could barely talk on the phone. So when my ex-daughter-in-law called to ask how Paul was doing, and I told her, she volunteered to call the doctor to move up the appointment. That was on a Friday and we got the appointment for the following Monday! (She's a good talker) My son was not too happy about his ex-wife being involved but I was happy. When you see the doctor, bring someone with you if you can. THey can help you remember what the doctor said and ask questions of their own. Make a list of your questions. I've even faxed the doctor my questions a had of time so they could be ready with answers in case they have to look them up.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



DB7 #154692 09-19-2012 06:01 AM
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The biopsy is tomorrow. What should i expect pain wise afterwards? He said hes going to numb my tongue and cut the suspect area out. Curious as to some of your experiences?

DB7 #154693 09-19-2012 06:12 AM
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Is this a biopsy or a surgery? A biopsy is taking a teeny tiny sample. The tissue my doc has taken for a biopsy is very small, about the size of 1/2 a grain of rice.

The bigger the area the doc removes, the more pain you will have. Im sure they will give you pain meds. Make sure you fill that prescription on the way home while you are still numb. It will be sore for a couple days with each day becoming easier to tolerate.

Results will take about a week to come back. Try to stay busy to keep your mind off worrying.

Best wishes!!!!


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
DB7 #154694 09-19-2012 06:14 AM
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Double whatever the doc tells you to be safe.


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.
DB7 #154736 09-19-2012 04:30 PM
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Hi DB7. I too am a newbie to this world, also glad that I found these kind folks. I had a fine needle aspiration that honestly, didn't hurt too much- she numbed the area beforehand. (ok, I turned green and almost passed out, but that's because I'm a wuss about stuff like needles. Have a feeling I'm going to have to get over that Real soon!) Last Thurs had a laryngoscopy. They did some looking around, and took some biopsies too. That was under general anesthesia, so painless until after, and even that was just a moderately sore throat. I wasn't given any pain meds, and only took some OTC Tylenol that night and the next day. I hope this helps. I get fitted with my mask tomorrow, so believe me, I fully understand your fear about all that you're going through as I am just now going through it myself. As have said, the wealth of knowledge on this forum has been invaluable in preparing me. I just have to ask..... Aston Martin fan???


Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
Life is What Happens When You're Busy Making Other Plans.
DB7 #154739 09-19-2012 04:58 PM
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DB7 - I too had BOT primary last year and had a biopsy done. It will be pretty painful after the numbing wears off but should only last a few days. You will need soft foods for a few days afterwards and be careful when chewing to avoid biting the area. It shouldn't be to bad after 2-3 days but everyone does recover differently so just be prepared. Good luck and try to stay positive while waiting for the results.


Female 47 former smoker (quit in 1986), very light drinker. 1st diag 8/1/11. Surgery 9/6/11 SCC L BOT Tongue T1N0MO stage II w/partial gloss with no rad or chemo follow up. Recur 8/16/12 T1N1M0 - stage III. Neck dissection surgery 8/29/12 with 35 sessions of rad and 6 chemo beginning 10/8/12.
DB7 #154766 09-20-2012 01:00 AM
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Thanks guys! No sorry, not a Martin fan...lol. ive been doing good at staying positive. Continuing to play sports and running/cycling. Ill just deal with the results when they come. Im pretty sure theyll come back cancerous as two different oral surgeons have both said thats what it looks like. Im just anxious to get started so i can tackle this thing, and very fortunate to have found all you guys! Were any of you displaying any type of symptoms prior to your diagnoses? Well anyway, ill type more later and check out some pf these other boards. Take care!

DB7 #154784 09-20-2012 08:53 AM
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A typical BOT SCC presentation first shows itself as a painless lump on one side of the neck and no other symptoms.


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.
DB7 #154787 09-20-2012 01:05 PM
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Strange as it may seem, I noticed my cancer because I tasted pepper in the back of my throat every time I ate potato chips. Knowing there are no taste buds back there I took a look. That was three 1/2 years ago.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
DB7 #154789 09-20-2012 01:59 PM
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Best wishes for your biopsy results.
I love that you are keeping busy and have a great attitude.
Just wanted to add that I had no symptoms either but did have metalic taste for a while before my biopsy.


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

DB7 #154790 09-20-2012 02:09 PM
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Well, back from my biopsy. Holy heck it hurts. Just like you guys said, as soon as the numbness wore off, it was on! Where I messed up was I took some Tylenol instead of what he prescribed, and it did absolutely nothing! I'm guessing this was a little more than a biopsy, because he took a good sized sliver off the left side of my tongue. Wow, hurry up a couple of days! They numbed me up, and cut a decent sized chunk out. I'll keep you posted as to what the results are in a week or so. Still staying positive and even playing volleyball tonight...lol. (dumb, i know)

DB7 #154798 09-20-2012 05:18 PM
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Fingers crossed it's nothing. Best of luck to you.... I swear we all should have our biopsy results done at the vets - my dog's results were back in 48 hours...


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
DB7 #154810 09-20-2012 09:08 PM
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hahaha, no kidding!

DB7 #154833 09-21-2012 10:44 AM
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Three times - seriously told my vet - next time I need a biopsy I'm going to him.


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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