| 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: 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 | 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: 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 | 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!
| | | | Joined: Feb 2014 Posts: 14 "OCF Down Under" Tasmania Member | OP "OCF Down Under" Tasmania Member Joined: Feb 2014 Posts: 14 | hi i got home from hospital yesterday and news not so good. seem it is a large tumor that he says he has now removed. but he says he could not get the clear margins so no further surgery is hightly likely. commando surgery? he is going to remove half of my jaw on the left side and replace it with bone from somewhere else. i will also be having neck dissection. hell just writing this is making me feel sick. i havent actuallly got the pathology results im sure they will be with the doctor when i see him later this week. i have so much questions and stuff. but i am just going to have a browse through here and see what i can find. this sitre is wonderful. i can not find any inforamtion on anything in tasmania to help what so ever any way im ok for now thats the main thing, and the horrible pain i was having before is now not there thank god
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: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | i am so sorry to hear this, prayers
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Feb 2014 Posts: 14 "OCF Down Under" Tasmania Member | OP "OCF Down Under" Tasmania Member Joined: Feb 2014 Posts: 14 | thank you so very much xx
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Hi,
Not sure what your medical options are where you are located but try very hard to get another opinion from a different specialist, and I mean NOT a surgeon. You see a surgeon and the answer is surgery. You see an oncologist and they say radiation and chemo. These are the two known proven methods of killing cancer.
Better still get your case presented before a tumor board. Many doctors with different specialties are present and weigh in their opinion. You can attend, press hard if they say sorry but no. It is your life they are making life altering recommendations - you have a RIGHT to be there if you so desire.
Good luck
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | Sorry to hear the results are not what you and what we all hope for for you. Best wishes to you.
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!
| | | | 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 | Hi there.. I think based on the type of cancer you have the surgical alternative is likely best at this point with follow up from rads and chemo. It's hell on the body but also the best chance at beating this- clear margins are always good but no guarantees. Its like this... you have a tumor with surrounding cancer involved cells. Now, if they go in and remove the tumor and surrounding tissue and follow up with rads, then there is less of a chance of one or two cells remaining than if they just hit it with rads. On a scan the tumor may be gone, but on a cellular level there may be one or two hangers on. Another reason for them to grab your nodes too.
Usually the bone they take from elsewhere is a leg bone. A few here have had a similar surgery and are doing VERY WELL. They can likely give you the nitty gritty details. (though from what I gather bone has less chance of being rejected because it's yours.)
Since he is messing with your face I would hope a plastics guy is involved. The ENT removes the bad stuff and the plastics guy puts you back together...DELICATELY..
I know people shake their head and say well how you look is unimportant as long as you beat this. This is true to a degree, however normalcy is also very important to healing and fighting off depression.
I sincerely hope all goes well and that you are being treated at a top cancer center. Hugs and best wishes.
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 | thanks all. yes i am waiting on plastic surgeon to get in touch, i am so angry in hospital the doctor said 1 or 2 weeks wont make any difference and i am into my 3rd week from the surgery. i have heard nothing. i rang the doctor on Thursday and he had only just sent my info (by snail mail) on Wednesday. the longer i am waiting the harder it is getting. i can feel my self getting down and i want to be as positive as i can. i just hate the thought of the cells that may be left sitting in there growing. bloody doctors. i wish i could get in and see some one else but unfortunately we don't have any more to choose from where i am
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: Feb 2014 Posts: 14 "OCF Down Under" Tasmania Member | OP "OCF Down Under" Tasmania Member Joined: Feb 2014 Posts: 14 | also another question, the last week when i eat anything i have insatnt swelling in the side of my neck that just comes up in seconds and quiet large. it is kinda under my jaw. it only last for about half hour and it goes. but it is quite painful and that is turning me off eating
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: Feb 2014 Posts: 14 "OCF Down Under" Tasmania Member | OP "OCF Down Under" Tasmania Member Joined: Feb 2014 Posts: 14 | well since this post i have been back in hopsital. my April surgery didnt get clear margins so i was referred on to our biggest hospital in Hobart. i had a great team of doctors, plastics, max fax and. I had my surgery on june 2nd, 15 hrs later i was in ICU. they had remove a bit more of my tongue, remove the floor of my mouth (left side) put in a free flap from my arm, they had to remove part of my jaw to get the clear margins. and a bilateral neck dissection. the were only going to do my left side of neck but due to the swelling when eating going to my right side and then staying swollen they did a biopsy on the friday before my operation, and this of course came back a cancer cells. i also had a tracheotomy (this was the worst thing ever) and i was feed through nasal tube. spent 10days in the hospital before finally coming home. every thing healed very well and they were very very happy with it all. 6 weeks later today, i am now preparing for chemo/radiation therapy which will start next monday the 21st July. hopefully this will kill off anything that might be floating around. its a long road but i hope its going to have the best results.
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: Nov 2013 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2013 Posts: 104 | Sorry to hear that its back, you're in my thoughts.
Brian Stage IV TxN2aM0 HPV+ SCC 38 y.o. male 9/20/13 Sentinel Node Found 12/5/13 Start of 72Gy and 5 bags of Cisplatin 1/21/14 Treatment Ends 1/25/15 1 Yr clear
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Glad to hear the suregery went well. I know exactly what you mean about the trache. Chemo and radiation will be hard but it's life-saving treatment and after what you went through in surgery, it will be less intense. Stock up on books and DVDS! Will be thinking of you. Maureen
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | It sounds like you have had a great team with a good surgical plan and that you have come through this surgery well. No mean feat on your part. Next comes the chemo and radiation. This is not an easy treatment, but very necessary to achieve that cure I know you want. I hope you have family and friends to support you through this next phase of treatment. Take care, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | 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 | Your story is mine only my drs gave me the works the first Time out. Not a fun surgery and yes the trache totally BITES. Congrats on getting through it. Rads and chemo are harder but doable. 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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