Hi. I am a 46 year old woman who has never smoked, but has drank in the past and has had a lot of dental problems over the years. Where do I begin....... For the last ten years (approx.), I had a painful whitish reddish patch on the right side of my tongue. During the first few years, I never thought much about the possibility of it being cancer because it didn't always hurt. As a matter of a fact, it often seemed like it would hurt more at certain times of the month.
Starting about 2006, it got to be really painful at times... Really bothersome. My doctor suggested I see an ENT in Buffalo, NY. (I lived in NY then, am now in VA). Anyway this doctor saw me several times over a period of about 3 yrs. We discussed the possibility of it being biopsied. This doctor didn't want to biopsy it however because he was afraid that it would aggravate it. Although he didn't use the word cancer, I think he meant that it could become cancerous. I was kinda glad he didn't want to biopsy it because I was afraid it would be really painful. This doctor seemed to think it could have been caused and / or made worse by my tongue rubbing against crowns on my teeth. My current ENT also thinks this is likely.
In 2009 I moved here to VA. I have been seeing my current ENT off and on for 4 years. He always wanted to biopsy it from the beginning. I was really chicken when it came to having this done. I would go home, and it would start to feel a lot better, sometimes not hurting again for months. This went on for years. In 9-2013, I went to my dentist for a routine visit. I had talked to them about it a little bit in the past, but hadn't mentioned it that day. She brought it up to me, and said it should be biopsied, actually mentioning the word cancer as a possibility. I saw the ENT again in Oct. (he gets really booked up!). He said he could biopsy it, but to be sure -basically to be thorough he wanted to remove the whole thing (a one inch by one half inch section). He also mentioned the possibility of "low grade cancer". Then he mentioned this "poor lady" who had waited too long (another patient of his). I was totally freaked out, and scheduled thug surgery.
They did the surgery on 12-5. I had to go to the hospital because they used general anesthesia. It was scary, but I got through it. I absolutely went through hell (so it seemed) awaiting the results of the biopsy, which I didn't get until Dec. 10th. It was NOT cancer!! I was elated, feeling so thankful. I had a lot of swelling and difficulty swallowing, but was okay..... so I thought.
I was feeling better, but on 12-26 I started having some pain next to where they had done the surgery. I felt my tongue, and there were two things that scared me 1. A hard place / spot and 2. A thing that felt like a squishy lump or piece of skin that was sticking up. I called the ENT's office, but of course there was hardly anyone there because of the holidays. The soonest I could get an appt. was for 1-7-14. In the mean time, a lump started to appear where I first felt the hard place. The ENT is primarily concerned about this lump, and mentioned the possibility of cancer again!! He said the other thing, which is soft and fleshy is probably caused by one of the stitches not having held together right. I have to have surgery again, and it is scheduled for 1-23. It's kind of like a nightmare. I thought I was okay.... For now, at least. Of course they are going to do another biopsy, and I am worried about this one. The "lump" (don't know what else to call it) is hard and mostly whitish, and is approx. 3/8" wide. I keep worrying that it's getting bigger, and look at it in the mirror 20 times or more a day. In the mean time, the fleshy soft thing directly behind it had shrunken somewhat. The ENT didn't measure the lump in question, or take any pictures of it. I have been taking pictures, and can post one or two...... but I don't want to gross anybody out.
That's my story. I am really WORRIED, and just wanted to share it, and to compare notes. Thanks for listening. Hopefully the news I get in a couple of weeks won't be bad, but I think I am more in danger this time. What they removed in Dec. was not hard.

You need to see an ENT who specializes in oral cancer. The rule goes like this.... any sore you have in your mouth for 2 or 3 weeks that has not heeled on its own should be checked by a professional. That means either an oral surgeon or ENT who specializes in oral cancer.

It could be any number of things but without a biopsy its just guesswork. Of course they are giving you their educated guesses but its still only a guess. Get it biopsied and find out what you are dealing with.

Hope its nothing serious! Good luck!!!

Hello Wendy:
Welcome to the family; hopefully your involvement with us will be short lived, as in you will find out it's not cancer.

Whether it is, or isn't, there are a couple of things you can learn from those of us who were diagnosed with oral cancer.

First and foremost, stop worrying so much. I know this whole thing scares you to death, but you have to get control of that fear. If you can't get appointments on a timely basis to your ENT, then consider a different ENT.

Looking in your mouth 20 times a day just keeps this thing in the forefront of your existence, it keeps you thinking about it all the time. Stop that. You have lots of other things going on in your life too, many of them pleasant and peaceful. Spend some a lot of time concentrating on them. Read a good book, watch a good movie, go visit your friends (and don't talk about your mouth), pursue your hobbies ... you do have a hobby don't you.

If it is cancer, there's nothing you can do about that except to start treatment. Worrying about it won't help anything, it will just make the rest of your life miserable. And cancer loves miserable; miserable increases the stress level which further weakens the body making it even harder to beat.

You seem to be the worrying type, that is already a strike against you. You would do well to look up one of our forum members named Bart and start reading what he writes. He has had cancer 4 or 5 different times in his life, yet has found the key to maintaining a positive attitude about this whole journey. That alone has probably saved his life. Getting to know him and following his advice made my journey through diagnosis and treatment much easier to handle.

Good luck with your 2nd surgery, let us know how it turns out.

Tony

Thanks to everyone who replied. I didn't know there were actually ENTs who specialize in Oral Cancer. I don't really know what to do at this point... I mean the one I am currently seeing is familiar with my case. If I have any more problems with things like stitches not holding right, etc.... I will have to make a switch. There are other ENTs at the practice were my ENT is. I think he is the head ENT.... But maybe I should ask him if there is one there who actually specializes in this area?!

One thing I didn't mention is that I have a severely Autistic daughter who is 9. She is non-verbal. I have to focus on helping her, and also the problems that come with having a child with such a SEVERE disability. She can be a joy to have around too : ) She has a great sense of humor. I also have a "normal" child (10 yr. old boy) who is very smart. He is probably my best friend. Don't really have any friends outside of my family ....sad to say, but true. My husband is mostly supportive, although he doesn't always want to hear about this. He thinks I tend to panic too much, and that's often true.

Hope you all have a good day.

Most ENT's that "specialize in OC" are affialted with Cancer Centers. Some "local" ENT's have more experience with OC and those would be my first choice but really any ENT should be able to treat you.

Hi there.... okay my story in the nut shell - see if you find any similarities. I had a bad molar for years (mostly filling) the filling fell out quite a few times. It was sharp. Rubbed up against the underside of my tongue. A visit to the dentist around 2001/2 He looks under my tongue.. sees a white patch refers me to an oral surgeon.
Oral surgeon removes it and sends it for a biopsy. It comes back thickened skin (like a small callous to protect it from that tooth.
Jump ahead about 7 years.
I have that tooth capped. Then I start having pain. So I repeatedly go back to the dentist to have the damn cap filed down. This goes on for a few years. Finally (at this point my tongue is VERY painful when I eat) I go to my dr. and tell him. He immediately refers me to idiot 1 (an ENT) Idiot 1 - arranges a biopsy (after taking a full medical history - see below) The day of the biopsy he looks in my mouth and says I see nowhere to biopsy... no open sore, no white patch just an angry red tongue that is SORE (the level of daily soreness varies with foods and what not, so it was never sore and getting worse... just sometimes it's worse than others) he says... well I'll just grab a random patch. (he's an idiot because clearly he has minimal knowledge of oral cancer and does NOT do a thorough examination)
He does - results - irritated skin. nothing more. Not even mild displasia. Now if he had felt my tongue he would have felt a small lump inside.... I thought it was scar tissue from the removal of the thickened skin. He didn't even notice it. He did not tell me to come back if it didn't get better - he suggested food allergies??? and / or irritation from the cap.

Negative biopsy.

jump ahead ahead 2 more years... problem ongoing.
I have a second cap put in behind the first - my tongue loses it!!!!!! It goes from sore on and off to EXCEPTIONALLY SORE ALL THE TIME. My Dentist says - have it biopsied again. I go to my dr. and he refers me to idiot 2 (another ENT)(he's an idiot because he has the beside manner of a sadist) and he says it's lichen planus but does want to do a biopsy. He goes deep. Without freezing and then tells me I can wait for him to get back from vacation (a month later) to book an appointment and get my results (that's reason two he's an idiot)

I told him I wouldn't wait that long and found out from my dr. 10 days later that I had oral cancer. By the time Idiot 2 got back from his vacation, I'd had two cts, and an MRI and a referral/appointment - with a top notch ENT/Surgical oncologist at the local cancer center. A month after that I was in surgery.

NOT all ENTs are made the same. My cancer is HPV- I have no precursors for it. Thankfully because I was in good health my body managed to contain it for as long as it did. It was considered well differentiated (thank GOD) in my tongue, but jumped to a node very quickly after the biopsy. And the node was well to moderately differentiated.

Do keep a close eye on the area. Have it looked at repeatedly and if you aren't getting answers or satisfaction... see someone ELSE.

best of luck

Wendy,

Often the general classification is called HNC for Head and Neck Cancer of which oral cancer is one such type. Asking for an ENT with HNC experience may broaden the options a bit more while not losing any specialty.

Don

Hello
Yes, there do seem to be a number of similarities between your case and mine... That kind of bothers me, yet I am SO glad to be able to discuss this with people who have experienced similar things (some of which, of course, are worse). It's too bad that there are doctors who don't put the patients first. I know there are some who do care... but sometimes it seems like they are few and far between. Mine doesn't seem uncaring.... at least I don't think so. It does seem like they are always in a big hurry though. Perhaps there is a shortage of them?

If the second doctor you mentioned was too busy getting ready to go on his vacation, he should have referred you to someone else, or even made arrangements for another doctor to take care of things. If I were a doctor in that position and I knew I had a patient who was worried and / or scared, and who could have a serious problem, that's what I would do.

What scares me about my situation is that I just had surgery in Dec. (to remove the leukoplakia), and I thought my mouth was healing okay... Part of it did. Then this thing just started forming right next to where they did the surgery. It is not big, but still it wasn't there before they did the surgery. I am kind of wondering if the ENT I used to see about 6-7 years ago was right when he said that biopsying the Leukoplakia could aggravate it -I think he meant to the point where it could become cancerous. I can kind of understand that, but I can also understand a doctor wanting to remove it just to be sure. My current ENT told me he had "seen too many of these things explode" (become cancerous). I asked him when I saw him on 1-7 if he thought the surgery could have aggravated it to the point where it became cancerous because of the surgery (told him what the other doctor had said). He admitted that it was possible. I would be interested in your opinion on this, and anyone else's opinion who happens to read this.

I hope you don't mind if I ask this question, but what was your pain like? Mine doesn't hurt much unless I press on it. The affected part of my tongue kind of feels like wood at times. By that I mean it feels rough and hard, and like there's little feeling in that area. Anyone who happens to read this whose tongue was affected and wouldn't mind describing how it felt, I would really appreciate it. That could be helpful. Then again, maybe I am worrying too much.

Thanks to everyone fir the info. and for the support.

Mine was okay.. for example in the morning when I awoke it would feel okay... but as the day went on it became more aggravated. Talking and eating and contact with certain acidic foods really brought on the pain. But that also has a lot to do with the fact that it was growing inside the skin. So you have a contained area, and it's burrowing into the muscle of your tongue. It was actually almost a relief after the first biopsy because it was frozen, and then the pain was there but less pronounced. Then it healed but still remained painful. The larger the tumor the more painful as it becomes more invasive. If what you have at this point is superficial - then likely it's only painful to touch. Some oral cancer is not painful at all. I think it depends on where it is located - (the tongue seems to be worse in the pain department likely because it is very vascular/enervated/and muscular, and moves a lot.)
My final biopsy - never healed because cancer doesn't heal. They can remove most of it so you will get something that simulates healing, but if there is even a little bit of questionable material left - then the problem has the potential to return.

Do I think that removal of leukoplakia/dysplasia etc... can push it into the cancer zone?

Yes. I think this depends a great deal on the surgeon. If they are going to remove it then it should be treated like a cancer - take a big enough chunk that you get clear margins and nothing insidious is left. Then hopefully it will heal (at this point you minimize the open wound's exposure to acidic foods and keep the area clean (rinsing and brushing after meals) . My actual tumor (and as you know it was cancerous) was 2.4 cm (just under an inch) by 1.4 deep (half an inch). It hit muscle - they removed a 3rd of my tongue.

I would also be inclined to change my diet. I know that sounds weird... but maybe move to a more alkaline diet... acidic bothers the area. Minimize sugars. I also noticed when I was going through it that live probiotics helped a bit with the inflammation.

Drs. simply don't know what causes it. I got bounced around dx wise - they said leukoplakia, lichen planus (which can also mimic an allergy to the amalgam used in some caps). Whatever it is I feel there is a connection to chronic irritation of the area (drs are split on this) I can tell you that people who smoke end up with long term irritation to the lungs - this initiates cell change - which can eventually turn into cancer - this is the same for oral cancer. So even if it's not from smoking - irritation can be caused by many things - there is still that potential for cell change and damage. So to me this is a very possible link.

(sorry for the biology 101 lesson)

As for idiot number 2 - he was an ass with NO COMPASSION. And I knew if I were to get a cancer DX - being that I had NOT precursors for this disease - I would be seeing someone better. In fact - I refused to be referred back to him. A friend who works for the head dr. at my local hospital asked the top ENT there who he would send his daughter to if she were me. He gave us the name of the top ENT/Surgical oncologist in Toronto - I had myself referred to him and that put me in the number 1 cancer hospital in Canada - and one of the top 5 in the world.

We all like to think that our drs have our best interest at heart - and to be honest some do. Some are amazing. However, they see thousands of patients, and while you are their priority that ten minutes you are sitting in front of them, NO ONE will look out for you and your interests the way a family member or you yourself will.

hugs.

When my ENT did my two tongue surgeries, he removed pieces and sent them to pathology right away so he could be sure of margins. And with the first, we were not even thinking cancer. Thankfully he planned ahead. The samples were also frozen so other doctors could study them, which was handy during second opinions while planning our first treatment.

Yed, mine did come back and I am facing more treatment, but if he had not been quick to check and particular about margins, this could have gotten a whole lot worse very fast.

Good luck finding a better doctor!