| | Joined: Jun 2013 Posts: 13 Member | OP  Member
Joined: Jun 2013 Posts: 13 | I have had a sore on the back under side of my tongue for 8+ months. I had a few different things done, like gels, some dental cream stuff, and I had it catuerized 2 weeks ago. Nothing has worked, i garggle with salt water, and used all the over the counter things i could.It kinda looks like a cut, with white kinda spidery stuff on it, it is very painful and not just when i eat spicy or sour foods, it hurts no mstter whst i eat
I had a biopsy in 2 spots today and a scope to go into throat?vocal cords,and voice box.
there was nothing seen besides on my throat, however it was very swollen and now i am in severe pain from scope and breathing tube they said i had to have.
someone please give me advice im freaking out really bad and just want to know what anyone with this experience has to say
Tongue Lesion 7+ months,CT -, Biopsy +SCC 6/25/13 (didn't ask kind,size,stage...scared/shock)DX fond out 7/3/13, excision of tongue clear margins 7/9/13 spot found 8/13 excsision with frozen sections was SCC had clear margins,10/25 3 more spots 11/19/13 tongue and floor of mouth excision with frozen section of 3 cm
Jenn P
| | | | | Joined: Jan 2013 Posts: 10 Member | | Member
Joined: Jan 2013 Posts: 10 | Probably not a lot of advice to be had at this point, until you get the results of your biopsy. You may have a real problem, and you may not. Hopefully you'll receive some news that will help you take the next best step. Please keep us informed of the results.
Best of luck! Andy
Oral Tongue Cancer, SSC, T1 1.5cm diameter,.3cm deep,HPV neg
DX: Dec 21, 2012
Surgery: partial glossectomy +-15%, Jan 4, 2013
Oral Lichen Planus since 2008'sh
| | | | | Joined: Jun 2013 Posts: 13 Member | | OP Member
Joined: Jun 2013 Posts: 13 | thank you, scared to dealth dont know 1 thing of what this cld possibly be
Tongue Lesion 7+ months,CT -, Biopsy +SCC 6/25/13 (didn't ask kind,size,stage...scared/shock)DX fond out 7/3/13, excision of tongue clear margins 7/9/13 spot found 8/13 excsision with frozen sections was SCC had clear margins,10/25 3 more spots 11/19/13 tongue and floor of mouth excision with frozen section of 3 cm
Jenn P
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | What breathing tube?
How much did they take during the biopsy?
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.
| | | | | Joined: Jun 2013 Posts: 13 Member | | OP Member
Joined: Jun 2013 Posts: 13 | They put me completly under,and had the breathing tube/machine thing in along with the scope. I am not exactly sure why, they scoped my voice box vocal cords and I think my throat.
They biopsied 3 different spots, 2 of which are stiched up. it's pretty big spot, not sure exactly how much I was really out of it, and my boyfriend was very confused. I have had a lot of appointments leading up to this, i seen my Dr. 8 months ago, who gave me a dental type paste stuff which didn't work, then they did like a scraping with a brush thing and blood work which came back negitive and blood was just white blood cells a little off, nothing huge just a little off. then they sent me to dentist, who sent me to an oral surgeon. well i ended up having to have oral surgery on 3 teeth however he told me he would not touch it to go see an ENT so i went and he gave me a wash medicine and gel stuff and that didn't work so he then cauterized it and again gave me medicine i swisshed around it was a steroid and something else which didnt work so then this is what he did. orginally it was the size ofand looked like a canker sore, but has grown its about the size of a little bigger then a quarter, and it's also like a cut above the sore...
i don't know im so confused because noone has yet to say what theythink it is or what it might be.
one step at a time i souppose
Tongue Lesion 7+ months,CT -, Biopsy +SCC 6/25/13 (didn't ask kind,size,stage...scared/shock)DX fond out 7/3/13, excision of tongue clear margins 7/9/13 spot found 8/13 excsision with frozen sections was SCC had clear margins,10/25 3 more spots 11/19/13 tongue and floor of mouth excision with frozen section of 3 cm
Jenn P
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Sounds like a pandendoscopy, also known as a triple scope. It's commonly used to check for cancer, take tissue samples in the upper aerodigestive tract alone or during another type surgery, and had several myself. 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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Probably it's nothing and it isn't cancer until they say it is. I had a similar sore read my profile - and as scary as a cancer diagnosis is - its survivable. The best thing to do if you get bad news is to make sure you get to a CCC and see someone tops in their field. I am hoping that its nothing. If it does turn out to be oral SCC - we're here. 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
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Try to relax and keep yourself busy so you stay calm. Waiting for test results can be brutal but by keeping yourself tied up with things that take alot of concentration it will help the time go by quicker.
Only thru a biopsy will the doctor know what they are dealing with. That is probably why they arent giving you their guesses as to what this is. All too often oral cancer is not identified visually.
Hope it turns out to be nothing serious but if it would be cancer you have found the best place for support and info.
Good luck!!!
ChristineSCC 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  | | | | | Joined: Jun 2013 Posts: 13 Member | | OP Member
Joined: Jun 2013 Posts: 13 | Hi,
its cancer and im more confused now then ever....anyone have advice
Tongue Lesion 7+ months,CT -, Biopsy +SCC 6/25/13 (didn't ask kind,size,stage...scared/shock)DX fond out 7/3/13, excision of tongue clear margins 7/9/13 spot found 8/13 excsision with frozen sections was SCC had clear margins,10/25 3 more spots 11/19/13 tongue and floor of mouth excision with frozen section of 3 cm
Jenn P
| | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | Sounds like we are in a similar place, I had a tongue sore that would not heal. Surgery was necessary whether it was cancer or not due to size, and biopsies during surgery told us it was cancer. The surgeon took out what he could to get clear margins. Later we got the full pathology report that told what kind, etc. Hopefully you will get more detailed information soon too.
Kristen
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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