| | Joined: Feb 2014 Posts: 14 "OCF Down Under" Tasmania Member | OP  "OCF Down Under" Tasmania Member
Joined: Feb 2014 Posts: 14 | went to my oncologist last week and i have ulcer under my tongue right on the scare from my first operation. 6 days later that ulcer is so big and disgusting. i am just about to leave and go to the casualty department where my ENT is on call.
i am supposed to be having a PET scan on monday and MRI on wednesday next week and see my oncologist on thursday.
november 2013 biopsy/ partial exision on right side tongue
confirmed scc
dec 11 2013 surgery to remove cancer
19mm by 7mm
no RAD
bad nerve pain caused by tumor growing on nerve
21/2/14 started Lyrica pregabalin
17/4/14 biopsy\ partial glossectomy
stage 4 tumor left side tongue and floor of mouth.
2/6/2014 opn to get clear margins/ bilateral neck dissection. bone removed from jaw & free flap on floor of mouth & more tongue removed.
21/7/14 radiation and chemo
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | I hope its not cancerous! It could be something related to the surgery.
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: 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 | Fingers crossed - it may just be an ulcer. cleaning your mouth after each meal and eating non irritating foods - see if it heals a bit. Hopefully it will, but do go see your dr. asap. A scan will not help as inflammation also shows up on a scan. He will tell you if he thinks it's something insidious and likely do a biopsy. So why wait? take care and 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: Feb 2014 Posts: 14 "OCF Down Under" Tasmania Member | | OP "OCF Down Under" Tasmania Member
Joined: Feb 2014 Posts: 14 | i had my PET scan and MRI this week and got results. my oncologist is still convinced it is cancer my ENT not so. he is going to do a biopsy and excision hopefully soon to be 100% sure. mean while he has upped my targin dose to 40/20mg and i am on 600mg of lyrica a day. and still the pain is here. the nerve damaged is my lingual so they told me at the pain clinic after proding inside my mouth. he said maybe a nerve block could help but thats all he said. any way i will wait patiently for the biopsy and see what happens. i have already lost 6 kg in just over a week, cause i cant eat much at all. i have just slightly got the pain under a bit of control after having a yogurt for my lunch. 
november 2013 biopsy/ partial exision on right side tongue
confirmed scc
dec 11 2013 surgery to remove cancer
19mm by 7mm
no RAD
bad nerve pain caused by tumor growing on nerve
21/2/14 started Lyrica pregabalin
17/4/14 biopsy\ partial glossectomy
stage 4 tumor left side tongue and floor of mouth.
2/6/2014 opn to get clear margins/ bilateral neck dissection. bone removed from jaw & free flap on floor of mouth & more tongue removed.
21/7/14 radiation and chemo
| | | | | 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 | I had a hole in my tongue for a while (this was after rads though) I thought for sure the cancer had returned - I did everything and it didn't heal - my ENT said he thought it was an ulcer gave me oracort - following the directions (use it 2x daily) didn't work after two weeks I was beginning to freak, but I also didn't want them bio paying it unless absolutely necessary - frustrated, I started washing my mouth after each meal and then applying it, and applying it before bed ..l within two weeks it was gone.
Sometimes if it's deep enough it can be VERY painful, and sometimes an ulcer is just an ulcer, here's hoping this is the case with you. Push to get the biopsy ASAP!!!
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: Feb 2014 Posts: 14 "OCF Down Under" Tasmania Member | | OP "OCF Down Under" Tasmania Member
Joined: Feb 2014 Posts: 14 | i am booked in to hospital thursday for my biopsy. praying it comes back as just a ulcer. it hasn't got any worse but hasn't got any better.
november 2013 biopsy/ partial exision on right side tongue
confirmed scc
dec 11 2013 surgery to remove cancer
19mm by 7mm
no RAD
bad nerve pain caused by tumor growing on nerve
21/2/14 started Lyrica pregabalin
17/4/14 biopsy\ partial glossectomy
stage 4 tumor left side tongue and floor of mouth.
2/6/2014 opn to get clear margins/ bilateral neck dissection. bone removed from jaw & free flap on floor of mouth & more tongue removed.
21/7/14 radiation and chemo
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Remember this a saying we use frequently around here..... its not cancer until a biopsy says it is.
Keep us posted on how you make out.
Best wishes!!!
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: 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 | Christine is right... they can be nasty too... ulcers sometimes take a bit to heal. Hopefully, it's just that. hugs and best of luck.
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: 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 |
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Echoing David's response.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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