#83497 11-04-2008 08:46 PM | Joined: Jun 2008 Posts: 11 Member | OP  Member
Joined: Jun 2008 Posts: 11 | Hi All,
I need your help in figuring out what is going on with my mom.
My mom has been fighting with an extremely sore, swollen tongue for months. It�s been over a year at this point. The tongue is persistently swollen and has a red dot the size of a nickel on it. Her tongue is just too painful for her to take anything in by mouth. It�s so swollen that she has trouble speaking.
She had a second surgery (a mandibulectomy) related to her oral cancer this past June. The Surgeon says she appears to be healing at the surgery site well. We have been to her oncologist and surgeon over and over again. Her oncologist says it does not look like thrush. He�s baffled at what is going on. It�s obvious to me the surgeon does not know what is going on either. He likes to focus on how well the surgery site is healing.
I don�t know what else to do. My mom is in perpetual pain and discomfort.
Has anybody experienced a persistent swollen tongue?
Babsdaughter
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | My tongue was swollen and extremely painful but that was right before the confirmation of the diagnosis. Perhaps ask the doctor to biopsy the site just to be on the safe side. Scans don't always tell the whole story. Sure hope you find an answer soon - I remember that pain!!!
Good luck.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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 | Has she been seen by an ENT since that spot occurred?
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 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Wow I would be confused too...I just wrote somewhere else that the doctors seem to have a good handle on issues concerning OC...guess maybe not wrong but like in everything some are good and some don't really know...
Please just keep insisting and pushing the old saying the squeeky wheel gets oiled..if it takes a biopsy, cause one thing I have learned from this site is that is the absolute final answer if it is cancer, then push the issue till you get an answer...
Hoping you find your answers and you mom gets some relief
Dianne
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Jun 2008 Posts: 11 Member | | OP Member
Joined: Jun 2008 Posts: 11 | We have not been to an ENT doctor. That is something to look into. At the suggestion of her doctor's nurse, I just made an appointment to see her dentist. | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | My tongue was swollen so I had to ask. It turns out it's not swollen but that the tongue muscle is just surrounded by not much.It feels swollen still , but knowing the Dr checked it makes me feel a lot better about it. Looks like a speed bump.
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
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Babsdaughter, Also, there are pain management Doctors that can help her with the pain control. I'm sure if she could get the pain under control it would definately be a lot of help to her until you can get her to an ENT or her Dentist. I sure hope she gets to feeling pain free while dealing with this problem. Good luck, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Get her to an ENT -- We found out my very swollen tongue had a tumor growing inside it, even after all that radiation...
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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