I have had a ulcer on my tongue for 7 months and it just will not heal. I have been to 4 different doctors and none of them have been able to help me with it.
My ENT did surgery to remove the ulcer in February and sent it off to be biopsied. It came back negative, thank the Lord. but now it has been 2 & 1/2 more months and it still will not heal and is in terrible pain. He is now sending me to a OMG to have it biopsied again.
Has anyone had an ulcer biopsied that come out negative, and later had another biopsy that comes back Positive?
What would cause this sore not to heal?
I have never been a smoker, or a drinker, but my Mom and 2 sisters all died of cancer, so naturally I am concerned.
Judy

We see things like this more than we would like to. You must stay vigilant and keep on pressing for a resolution, cancer or not. Only a confirmed biopsy can diagnose cancer but just for your information oral cancer is not only caused by smoking and alcohol. HPV has assumed a prominent role in the past decade and there are even more than a few patients coming to this site that are neither smokers nor HPV+ with oral cancer mainly in the forward part of the oral cavity including the tongue. Again keep on pressing until you get an answer.

Thank you for the reply. I also do not have HPV. So I have none of the known causes of oral cancer.

Judy, I have OC and it is the Unique Variety. " Unknown". Maybe this is your problem too. We are fiven some strange thins in life to deal with but just have to roll up our sleeves and make the best of it. Yes I have been thru the mill the last 3 years or so and have so far stayed in the fight and on top. I wish I had some words of advice for you but just can't think of anything. Just keep a good attitude and smile. After all it could be worse. Good luck and I hope things are just as the biopsy shows, negative.

I do also hope that things are just as the biopsy shows. I just want the pain to go away. 7 months of day and night pain bad enough to make me cry is just a bit much. I do keep a good positive attitude. And thank the Lord I never experience depression due to this problem.
I too have been through the mill with another disease that took years to diagnose. I hope this will just go away and not need a diagnosis at all.
Thanks for your help.
Judy

I have been fighting this pain for over 3 years now, but am holding my own against it as you are. Don't be like I was and take pain meds as I should have much sooner. LOL I was the tough guy. Now the listener to the Drs.

Judy,

I may have missed something, but what is an OMG?

I had no risk factors and had cancer on my tongue. Rule of thumb is that anything that is not gone within 2 weeks should be biopsid. The fact that you have this area that has not healed for 7 months is not a good thing, but doesn't mean that it is cancer.

Yes, you can have a negative biopsy and then a positive one later, so it's a good thing that you are having another biopsy.

Good luck with the biopsy and please let us know the results.

Hi Judy,
I apologize if you have already answered this and I missed it--but, is there any reason (when they biopsy it) they are not doing an excision biopsy and removing the ulceration?

The reason I ask is because I also had a very painful ulceration on my tongue--when I went to the Oral surgeon, he did not think it was cancer--however, he believed that it was a problem because it was so painful and wasn't healing. He removed it for the biopsy (with the understanding that he might have to go in again depending on what the pathology results showed). To his surprise, the biopsy was positive and I subsequently needed a partial glossectomy-but, I was pretty much pain free (for the first time in MONTHS) the week between when I healed from the biopsy and had the partial glossectomy.

So, I guess my point is that whether or not it's cancer--an ulceration that you have had for 7 months and causes that much pain is a problem, no matter the pathology results. Can you ask the dr to remove the whole thing when he/she does the biopsy?

Good luck and please keep us posted.

Be well,
Michele

Michele, I am sorry that I didn't make myself clear, non the less I surely do not mind answering your question.
The doctor did remove the ulcer at the same time that they did the biopsy. But He removed the whole thing surgically. The wound never healed up, it was done on February 12. about 2 & 1/2 months ago. In fact a small part of the wound where the ulcer was has broke open again,and again, so now they are going to send me to an oral surgeon to have another biopsy since it never healed. The ulcer has not come back, but just never healed. The doctor took of about 1/4th of my tongue. It is extremely painful, and the pain medicine does not touch it, although I continue to take it in hopes that this time it might actually slow the pain down some.
That is why I was wondering if a second biopsy may show something. I don't really understand the reason for another biopsy. I would like them to just sew the thing up so it will heal.
Thank you for your concern.

Thanks for the advise. I am taking the pain medicine. but it is not working. I even double up on it, but it is such a low does that it does not work.
I would gladly take something stronger but this doctor does not prescribe strong pain medicine.I guess he is afraid I would become addicted, or immune to it.
How are you doing now. do you have cancer?

I'm sorry that should have been OMS Oral Mouth Surgeon.

Hi Judy - I'm wondering what an OMG is too?! Is he sending you to an oral surgeon? How long has it been since the first surgery when the lesion was removed from your tongue and biopsied as negative for cancer?

Just saw your post that it's an oral surgeon - that's the direction I would go in too

Judy,

All the bioopsy is is sending a sample of the tissue to a pathology lab so it can be looked at under a microscope. With a non healing area for the amount of time that you are describing, it would be malpractice to not have a pathology study done on it and just suture your tongue.

Hi Judy
i didnt really want another biopsy after the first (very painful biopsy) came back negative. I even said "thanks but no thanks" to the ENT who did the first one, then 2 months later said we needed another.

A routine trip to the dentist 3 months after that, resulted in a late Friday afternoon rush to his oral surgeon friend to schedule in the second biopsy which came back positive.

Doesnt mean yours will come back positive, but answers your questions about whether you can have a negative one first and then a positive.

all the best for your own results.

Yes he is sending me to an oral surgeon. the sore appeared in November, and was removed and biopsied in February.It was at the time negative for cancer.

Hi Judy! So sorry to hear about what you are going through. My sister has also been going through what you have. 7 moths ago the sore came on her tongue and dr perscribed antibiotics. They worked to help it go away alittle but it always came back. She the. Went to an ENT who did a basic biopsy which came back negitive. They gave more antibiotc and sent her on her way. It soon became to painful for her to eat and she became nausea and dehydrated. She then went to the ER and they admitted her for 3 days. She had another ENT and infectious disease dr look at her and said it was nothing. That was the beginning of March. She wouldn't give up and found another ENT to look at her who scheduled her for a deep tissue biopsy 3 days later. During surgery he took a frozen section biopsy and we got the results of cancer! This was one week ago and now we are going to NYC for her treatment which we do not know what will be as of yet. I don't mean to worry you but PLEASE be persistant on this. You can have a negitive biopsy then positive. My sister is proof. She has also been battling for 7 months. Her blood work was always perfect too. Hope this helps and please keep us posted!!

Thank you for this helpful advise, I take it as a warning not to give up, but keep on being persistent. It does not frighten me, but keeps me on top of things, as I am the type of person that wants to educate myself about things that are going on in my body and everyday life.
I am now taking steroids which I have been allergic to in the past so I didn't want to take any, but last week my husband and I decided to give a mild dose a try, my doctor was a bit apprehensive but I told him I would still like to try it since the one that I was allergic to was in IV form.Certainly a tiny pill could not be as potent. I have been on it only 3 days, I do have less pain, with no change in appearance yet, and only a red rash on my face and neck, that is not bothersome.
I am attempting to get my insurance company to allow me to go to a oral surgeon, which my doctor also requested. There are none in network with them, in the 5 surrounding cities near me, but one very good one out of network. I will go to Her either way, but better with the insurance paying for it.
Thanks again for the advise.
This week my thyroid doctor found a lump on my neck so I will have a sonogram on that soon.He said he didn't think it was anything to worry about, but having knowledge of my tongue problem he thought it should be checked out.
I do hope that your sister gets the help and healing that she so needs.

Hello everyone the last I reported was the I was starting on a low does of Steroids. I just want y'all to know that it is starting to heal up a little. The sore under my tongue is a bit smaller, thank the Lord! The white spot, kind of like a lump is still very painful, and not getting any better, as is the same with the cut, about 1/2 inch in length and not very deep but very painful. I do have hopes that it is going to completely heal.
I only had a slight reaction to the steroids, but noting to serious, just a red rash on my face and chest, the worst part was the side effects of not being able to sleep, I have had very bad insomnia since I started on the steroids, the instruction fact sheet did say that could happen, but I never thought it could be this bad. I haven't slept more then 3 hours in 3 day!.Does anyone have this problem?, and what do you do about it? I take 3 steroid pills a day, and cut it back to 2 and it did help a little not taking it so close to bedtime, but I do not want to hinder the healing either.
My doctor did write my referal letter for me to be sent to an oral mouth surgeon, and as soon as I get the paperwork from the insurance co. I will be going to her, and have her take a look at what is not yet heal, if anything by then.
Thanks to all of you who have cared enought to write me. It has been a help and an encouragement. I will keep you posted.
I do hope that y'all are doing well in your situation with this horrible disease. Blessing to you all.
Judy L <><

Hello I am back again with the same problem. I had another surgery this past week and it was a lot worst than the last one. I had to go in the hospital just as I got back from vacation, as I had a bad infection in my tongue again. This is the second time having surgery on it, and it was much worst this time. The pathologist does not know what it is. He said some rare infection,it could be cancer, they may know more later on this week.
I am home from the hospital now but hurting and can not eat. I lost 1/4 of my tongue. My blood pressure went up to 208 over 111 my sugar dropped and I had to have an insulin shot, I am not normally diabetic. My oxygen was way to low making it hard for me to breath, and on top of that I was vomiting for 1 and 1/2 days. All due to the medicines that they kept changing to make
me well.
I am not sure where this is going, but I am looking forward to a quick recovery.
Judy L <><

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

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

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

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.

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

If its not healing it's not good! All the advice given is what I was going to say. Md Anderson is the best -