| Joined: May 2010 Posts: 9 Member | OP Member Joined: May 2010 Posts: 9 | I have had a spot on the inside of my mouth for about 5 months. It has just spread to another spot about an inch away. I asked my primary doctor about this a few months ago, and my kidney cancer oncologist 2 months ago. Both said "I don't know, dentist, ear nose and throat? Both just thought it was an irritation, but since it has not gone away and spread, I really want to get it checked. But I don't know what kind of doctor to go to. I don't have dental insurance, but I do have medical insurance. So I thought I would ask the expert here. I know from my experience with my kidney cancer, I can get more info from the forum than the doctors. | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | My husband, who had a small leukoplakia patch, started with an oral surgeon (DDS) who specializes in oral pathology (doesn't just pull teeth and such). After an initial biopsy of a tiny area showed moderate dysplasia, he was referred to an ear-nose-throat surgeon, or ENT (an MD), for an excisional biopsy, which removed the whole thing. That report came back showing squamous cell carcimona in situ, and he has since been checked regularly by a oral cancer specialist at Hopkins.
The oral surgeon was out-of-network for our medical insurance, so we paid in full and submitted the claims. ENT and cancer doc were in-network.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: May 2010 Posts: 9 Member | OP Member Joined: May 2010 Posts: 9 | Thanks for the quick reply, I made an appointment with a local ENT for the 20th. Hoping he can tell me it is nothing to worry about, and maybe even something to make it go away. But as you all know, the worrying is horrible. | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Praying it's nothing. Glad you were able to get an appt, just be persistent that they biopsy the site, don't let them shrug it off, better to be safe than sorry!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Find a good ENT and a good Oncologist.
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 2010 Posts: 224 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2010 Posts: 224 | I had a spot on the right lateral side of my tongue. all my doctors and dentist kept insisting i was either chewing on my tongue at night when i slept, or it was lichenplanus. But they referred me to a oral surgeon and he tried some things and they didn't work. So then he took a biopsy, 2 pieces. And that was charged to my medical insurance. And it turned out to be stage 3 SCC. So if the ENT doesn't know, check with a oral surgeon. Hopefully it's a fungus, irritation or anything but cancer, but if it's cancer, this is the right place!
25/female at diagnosis Dx;stage 3 SCC tongue 03/25/2010 Surgery 04/13/2010 Trach,ng tube, peg feeding tube Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue. 30 rounds IMRT ended July 15,2010 | | | | Joined: May 2010 Posts: 9 Member | OP Member Joined: May 2010 Posts: 9 | Well I went to the ENT today, and he said he was sure it wasn't cancer, and no need for a biopsy. Said it would be "thicker" if it were cancer.
He prescribed me some steroid ointment and suggested I use a toothpaste without the ingredient sodium lauryl sulfate.
I go back to him in 3 weeks. Sure hope he's right. Wish I had more faith in him. Thanks for your info, I will let you know if it doesn't go away. | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | Here's my opinion, not to scare you, but I need to say this, that's what happened to me steroid mouthwash for 2 weeks it spread under the tongue. My suggestion for peace of mind go to an Oral Surgeon they take medical insurance and not dental.
Better to be safe than sorry. I'm starting to wonder if ENT and some Dentist know what they're doing. Get a biopsy nothing to it.
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2. Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | 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 sure hope so too. Any chance you might get another opinion?
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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I had a stage one cancer that had no thikness to it at all, just a red coloration. No pain at all. Two doctors missed it and said it did not look like cancer until ENT took biopsy.
ENT said the other docs probably had never seen a stage one before. Said they rarely catch them that early and they do not present like stage 3 and 4 cancers.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
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