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.

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.

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.

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!

Find a good ENT and a good Oncologist.

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!

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.

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.

I sure hope so too. Any chance you might get another opinion?

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.

Mary,

Find another ENT or an oral surgeon who will do a biopsy. Anything that is present for more than 2 weeks needs further looking into. The "ONLY" way to know if it is cancer is to have it examined under a microsope. Nobody can tell you that something isn't cancer, just by looking at it. Thickness has nothing to do with it.

Thanks for the response, I am sure I will get another opinion. In your opinion, is a brush biopsy good enough?

Mary

In my experience, most brush biposies come back either negative or needs further testing. So then a regular biopsy needs to be done. So why do the brush biopsy first? Go to the gold standard from the get go.

I'm glad I didn't waste time with a brush biopsy.

Ya like I said, I went in, no one thought it was cancer, and they putzed around giving me a steroid gel first and then a anti fungal pill and none of that helped. So about 2 months after the first time I saw them, they finally did the biopsy and it was cancer. Again not trying to scare you, but my doc was a oral surgeon, and mine looked nothing like cancer, because the tumor was inside my tongue and the spot on the side of my tongue was it growing out the side of my tongue and I am a lot younger then most who get this, so it looked nothing like what it usually does. I would just ask them to biopsy just in case. If you go back in 3 weeks and have no real changes, I would ask for a biopsy, so you don't have to wait as long as I did to find out.

This is like spotting a Dollar and a penny on the ground. Which would you pick up 1st? LOL No bout adought it.

Well, the steroid ointment took away the burning and redness right away, but the tissue still looks different, and feels different with my tongue. I have also noticed some other spots in my mouth. A bump where my left tonsil used to be, and under my tongue on the right side. I see in my area there is a dentist that is a oral pathologist, and also we have a oral surgeon. I will be calling for an appointment on Tuesday. The one that has the earliest appointment is the one I will go to.

I went for my recheck to the ENT, the spot is basically the same as it was, just not quite as inflamed. He came in, looked at it and said "I don't know what the heck it is, it's not cancer, but I don't know what in the heck it is."

Gee thanks doc, does that mean I don't have to pay my bill?
At least he admitted he didn't know, I guess.

I'm really concerned for you and this doctor. He doesn't know what it is, but it's not cancer??? That's silly talk. All over this forum you will see that you need a biopsy to know what it is. He should want to do a biopsy to know what it is.

My spot looked like it was nothing too. Just a canker sore looking thing that wasn't going away. I went a whole year before I had a biopsy and I am thankful every day that it was caught before it was much worse.

I hope someone will be able to give you some answers.

cranberrymary,

Go to the search bar and look up "how potato chips saved my life" It is the story of my docs telling me i did not have cancer.

Take a look

I was told that my problems were nothing and that what ever was making my teeth fall out and making it difficult to eat would go away by a few drs before I saw a good one. Everything went away ok including my chompers when they had to be removed after a surgery and a reoccurence. How little some drs know. The lump on my tongue was also just a sore that would leave. LOL Oh yes. These all left with a 70 lb weight loss and asll other losses I endured. Find a good CCC and go for it.

I called a oral surgeon and made an appointment to get a biopsy done. Hoping he will just do it, I am really not interested in any other doctors opinions, I just want it tested. If he won't do it I will find one that will. The potatoe chip story was just too much like mine. I will let you all know, thanks for the encouragement. Mary

Went to the oral surgeon today and was told I have to be off the steroids for 2 weeks before taking a biopsy. They said the steroids suppress the white blood cells, and the biopsy would not show anything. He said he does not think it is cancer, but something is definately going on.

So I have an appointment for a biopsy in 2 weeks.

Kelly, I have just reread your post from the 5th March that you are referring to. It really enforces the fact that you need to be vigilant and persistent.
Mary, you are wise to have the biopsy . It is the only way to know for sure. Best of luck with the results.
Gabriele

Well, I got the results of my biopsy, it was done at UCLA Oral Pathology Lab. The CLINICAL DIAGNOSIS: ?

So they don't know what it is either, but there is no evidence of malignancy.

"The microscopic findings have some features of, but not diagnostic for lichen planus"

I was given a prescription for another steroid gel that is to sooth the lesion. I am hoping it does not continue to grow, and plan on watching it closely for any changes.
Thanks for all of your support and help. Mary

Great news Mary..you must be so relieved.
A celebration is in order I think. Treat yourself with something nice

Mary,

What wonderful news. You deserve a celebration in your honor.

Mary

Congrats on the excellent news!!!!! So glad you have finally gotten the results and that they are not cancerous.