| | Joined: Jul 2012 Posts: 1 Member |  Member
Joined: Jul 2012 Posts: 1 | Hi Judy,
I was wondering how you are doing, and if you ever found out what was causing the ulcer? I have had the very same problem since February 2012. This is now July. In May the ENT doctor removed the ulcer�.the biopsy came back negative. But, it never healed. During a regular dental checkup Thursday, my dentist told me the ulcer is now 8 cm. He was very concerned. The sore was 5 cm BEFORE the surgery. He sent pictures to oral surgeons who advised returning to the ENT doctor. I called, but he is out of town and will not be back until Monday. I have an appointment scheduled for Monday, but I am so worried.
Thanks,
Linda
| | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Dec 2010 Posts: 291 | Linda,
I do not know where in Texas you live, but I would go ahead & get an appointment with MD Anderson. You might be hours away. Regardless of what the ENT says, I guess I think you need someone who has seen hundreds upon hundreds of tongue lesions, and that would be at MDA. You could make the appointment now, and of course could break it later if for some reason you wanted to, but I think you would be glad you had gone ahead and started the ball rolling this week. Tell MDA you need a second opinion, don't have to tell them about your appointment next Monday. This just doesn't sound right to me. I don't mean to scare you, hopefully it will not be bad news, but please be proactive on this issue.
Best to you,
Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | I second Anne. Biopsies aren't perfect, if they've taken a tissue sample that is dysplastic but isn't yet cancerous the path report will turn out negative. Pathologists can make mistakes too so be aware of that.
The best advice anyone can give you when it comes to cancer is to get the absolute best medical advice available to you and in TX, it's MD Anderson, as it's one of the top ENT programs in the country.
Good luck
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | When a surgeon removes an ulcer they must take a larger section than just the sore. They need to take all around ti to ensure they get it all. Im surprised that it still has not healed. I would pay attention to your intake and try taking in extra protein. Whey protein powder is sold at all drug stores and many grocery stores. It can be added to any liquid and will help you with your healing.
Have you been following up with your ENT? What did the biopsy say your sore was? I would suggest its time to seek out another specialist, especially if it is something like a pre-cancer.
Best wishes!!!
PS... Judy has not posted since May so she might not be checking in to give you a reply.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I agree with all these answers. The tongue is a sensitive area as you know. My part tongue is a 24/7 pain thaat has been going on for over 5 yrs and it just must be somethnig I have to live with. I have tried everything to stop this dry mouth which aggravtes it and makes my tongue feel like alligator hide. I hope you can get this fixed. Good luck
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: 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 | If its not healing it's not good! All the advice given is what I was going to say. Md Anderson is the best - 
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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