Hello all!

I do not have a cancer diagnosis, but I am very concerned about myself. I have had a small white lump, perhaps 1-2mm on my gum on the left front of my upper teeth for some time. By some time, I mean at least a year. I have always been prone to get fever blisters, canker sores and that sort of thing, so I ignored it. Further, it has remained very stable in size and did not change at all for the whole time. I have recently noticed it seems to have grown. By coincidence I read an article this Friday on oral cancer. It got me to considering this lump on my gums. Clearly, this lump could be oral cancer and now I am convinced that it is. The mental pressure has broken me down. I am whacked.

I called my dentist and I am trying to get in ASAP.

Questions:

How long is too long for it ot have been there?

How long did you all notice your symptoms prior to seeking help/diagnosis?

How long does it take for the brush biopsy results to come back? I need to know asap as I am falling apart.

What stage were you when diagnosed?

Could this lump be something else? Is it more likely to be something else or not?

Right now I am whacked. If it is cancer I will never forgive myself for not acting sooner. I am a father with two young children.

Does anyone have any comments or information for me?

First off calm way down. The chances that this is cancer is not that good especially if you have had it for a year. The type of cancer one normally gets in the oral cavity is called squamous cell and it is usually very aggressive and fast growing. Untreated some patients die within a year of it appearing. There are many things this spot or lump could be beside cancer but you need to be seen by a trained specialist to get your answers.

I personally would skip the dentist level and seek an ENT.

A brush biopsy is not very reliable so again I would get to an ENT.

Thanks for this information. Tell me more about the brush biopsy. Why is it not reliable? What will the ENT do differently?

Thanks again!

Texas - I agree with David. From everything I've read and experienced it sounds as if you likely don't have cancer. He is also right in that an ENT is the person to see. I don't have personal experience with a brush biopsy but again, from what I've read, getting a "full" biopsy from an MD is the gold standard for determining whether a lump is malignant or not. I'm sure someone else can give you more details about the brush. But especially as you're so worried, an MD would both be more medically knowledgable and help put your mind at ease.

David 2

Yeah Tex...listen to David and calm down.

1st) It's not cancer...because a biopsy hasn't told the Dr to tell you that it's cancer.

2nd) Nothing else matters other then making the appt with the ENT and getting a biopsy done. Any other information will just add to your stress level.

So the moral...stop freakn out and get it checked out.

Hope that helps and oh yeah...welcome to OCF!

Eric

Thank you all. I will get it checked out ASAP.

Just FYI, my husband's lesion was first seen by his dentist, who referred him to an oral surgeon for the initial biopsy.

Given that this is on your gum, your dentist may make a referral to an oral surgeon (a dentist who has had additional extensive training in mouth surgery), rather than an ENT. An oral surgeon's biopsy is NOT the same as a brush biopsy, which is done by a general dentist.

When the pathology report came back indicating that the whole lesion should be removed, the oral surgeon then made the referral to the ENT who did that surgery.

Thanks for all of this information. How large are these lesions? Mine is very small, but it has been in my mouth a long time. I would say it is 1-3mm. Does that matter?

How long does it take to get back the results of a brush biopsy?

What about the real/tissue biopsy?

The results will take about a week to come back.

I have got myself so worked up a week is gonna be a beat down. For whatever reason my mind has just overcome me. A week is too long.

Hey Texassun. Its probably a skintag. BUT definitely get it checked out.
Life is too short to be up all night worrying! Hoping your results come back negative and all is on the up and up.

Thanks for the comments.

As I think back about this thing I get more concerned. At first it was sort of a white spot that I could rub off. When rubbed off it left a raw spot and eventually the white cover would return. It was so tiny that I just did not consider it much. I have always been prone to fever blisted and sores and it is not uncommmon for something to be going on in my mouth so I just didn't place any importance to it. I was ignorant about the possibilities.

Now, it seems less superficial and more into the skin. I can't rub it off as it is a part of the skin. It is still white, but a little less white than in the beginning. Of course my mind has raced to one conclusion and I have no idea how reasonable or unreasnable it is, but I am all consumed. I really cannot say how long this porcess has taken I just know it has been a long time. Over a year, maybe/likely more.

I realize that this speculation is getting me nowhere and there are no answers until science gives them to me but I just am so worked up I don't see how I can keep my sanity in between now and when I can have answer.

Does the process I have described for my lesion sound familiar to anyone else?

There could be any number of differnt things going on. Have you gotten the biopsy yet? That is the only way to tell if it is cancer. Worrying is not going to get you any answers, it will only get you upset. So often a person comes here convinved that they are dying of cancer only to find out there is something relatively minor happening. It is unlikely that it is cancer since it has been there that long.

Bottom line....calm down!

Thanks Christine!

I know your advice is correct but for whatever reason I am obsessing on this situation. It just builds and builds.

I saw my dentist today and she referred me to an oral surgeon to have it removed Thursday. She downplayed the significance of it but did say that she does note some tissue change and it is best to get it checked out. Of course in my state of mind I am focusng on the negative comment about tissue change.

I had already setup an appointment with an ENT tomorrow. I think I will go to it anyway and see what he says. I wonder if he will want to remove it or of that is best done by the oral surgeon? Who has hed experience with an oral surgeon versus an ENT? Do they have the capability to do the same things?

Do poeple often have unexplained lesions in there mouth that have been there for years and they turn out to be nothing.

I went to an Oral Surgeon, BUT as long as you have an appointment with an ENT Surgeon he might do the Biopsy I'm not sure if it really matters who does the biopsy as long as you get one. Just my opinion. Other might want to chime in on this.

Do you think they will remove the whole thing or just a piece of it? I do believe this thing is growing and I want it all out and I don't want to waite.

Do any of you have any good ideas on meds to reduce my anxiety?

The thing that is making me crazy is that I have known about this spot on my gum for a long time and did nothing because it did not hurt and didn't seem to change much. If it turns out to be something I will never forgive myself.

My doctor prescribed Ativan for me for anxiety. I find it works quite well. Xanax is of course another possibility, as are Valium and Klonopin. I'm sure there are others, and probably other ways to get at the problem, i.e. via anti-depressants. If you do get on one of the ones I mentioned take it sparingly. I haven't become dependent, but I do know that can be a danger.

Hang in there.
D2

[quote=Texsun65]Do you think they will remove the whole thing or just a piece of it?[/quote]
Depends on where it is and how tricky it is to remove it. In my husband's case, the oral surgeon took a tiny bit for the initial biopsy in an in-office procedure, but referred my husband to an ENT for a more extensive procedure (including full anesthesia) to remove the whole thing.

I went the dentist, Oral surgeon route. The ENT I went to will not even see you unless you have already been diagnoised with cancer. My Oral surgeon removed the entire spot but did not get clean margins. The waiting is always the hard part. Once you know you just sort of move on through it all. I am waiting on results of a CAT scan done last Friday. I would be lying to say it is not stressful but the results are the same whether I worry, cry, pray, hope or scream.

Ive had biopsies done by both the oral surgeon and also my ENT. They normally remove a tiny piece of tissue, about as big as the roller ball in a pen. Its amazing something so tiny can be taken and processd.

Please, for your own good, relax. It will not change the results. It only makes you upset. I am speaking from experience. Ive had many biopsies done, to me its only another procedure. I cant waste my time worrying, I put it out of my mind and keep living my life.

Every so often a new person joins who is off the charts with their anxiety levels. Too many times it has turned out to be nothing. After being so upset for weeks, they silently dissappear when the results come back no cancer.

We have all been where you are and gotten thru it. We are all pulling for you

Hi All!

This is where I am at. I went to the dentist and she referred me for biopsy. She downplwayed the significance of the lesion. I saw the ENT and he very much downplayed the significance of the lesion, but did remove it and send it for biopsy on Wednesday. He thought I would know something by Friday.

I had not heard anything by Friday afternoon and it was almost 5pm, so I reluctantly called my friend who is a pathologist where the biopsy was sent. He checked into it and told me that one of his collegues was the one reviewing the specimen. He indicated that it had been sent off for some "special stains" and would not be ready until next week. He was not real specific about why these "special stains" are needed and I didn't push too hard because I was most certainly already stepping beyond the norm.

Anyway, does anyone know why these would be referred for "special stains". It is a cause for alarm?

Some feedback would be great!

It seems I recall one example of a person on this forum where the doctors were sure it was nothing and then it turned out to be cancer or dysplasia. Does anyone recall who that is and do any of you have information to add?

Thanks so much!

Hi Texsun,

To be extremely honest, they downplayed me for weeks, even on my first visit I jokingly asked " So how bad is the cancer doc?" And he literally laughed,made a joke back and said youre too young, just an infection. I swear he medicated me on 3 different drugs before finally sending me for a biopsy. Then she also downplayed it, said I was young, and it didnt " act " like cancer or bleed like cancer so I had nothing to worry about.

Well, about 8 days later they called me in and what had me worried was over the phone they said and I quote " If you can, we prefer you bring a parent or family member with you when you come." I was like, thats not good...Either they think I am 12 or they got some terrible news for me ya know? So it was positive for squamous cell carinoma, did some wingin' around the system and now have a surgery set for the 16th and hopefully get it all removed with no problems. This has been a crazy journey for me and I understand what youre going through.

Nathan

Im glad to hear you have gotten the biopsy. Biopsies normally take about a week for the results. Best of luck with the results.

Several OCF members have had doctors who were not the best when it came to recognizing oral cancer. I dont remember exactly who it happened to. The most important thing is to focus on your health.

Hi, Texsun -
I'm glad to hear that the pathologist is being thorough. Different tissues react differently to different testing agents, whose names are long and probably in Latin. "Special stain" seems like a shorthand, and it's easier to say than a chemical name.
Many here have experienced the "don't worry" opinion, but you are being vigilant and proactive, and your doctors haven't denied you a biopsy. Not knowing is worse than knowing, but some results don't come quickly. I had two biopsies. The second was studied twice, and it took two weeks to get the second set of results. The wait was terrible, but doctors can't rush the process, just as you can't rush the 24 hours it takes to cycle through a day; although, some days seem longer than others.

Marlene

All tissue samples a stained before they a looked at under a microscope. Otherwise you can't see the things you need to look for. Do not let this bug you, it means nothing. Different tissues take up different types of stains. What you use on heart tissue is not what you would stain epithelium (mucous membranes of the mouth) with. They are all "special stains"

It sounded to me like the pathologist interpreting the slide may have seen something and then asked for the special stain. But, this is somewhat speculative on my part. It sounds is if there is a routine set if stains that are used and if something is seen then special stains are requested. But again, I am not certain of this. Does anyone know?

I just cannot think of a reason why I would have this lesion on my mouth for so long if it wasn't something serious. It has not grown much but it has changed over that time period. If it weren't serious it seems it would likely go away.

The mental pressure is building and I am really having a tough time. I try and hang onto the words of the dentist and the ENT that said they are not concerned, but I have heard of enough stories on this forum where everyone was unconcerned yet it turned out to be cancer.

There are things that persist in the oral environment that are not dangerous. BUT having said that the rule is persistent things need to be checked out, as some of them like oral cancer are dangerous. I wouldn't find any comfort in the words of the dentist and ENT that think it is nothing, there are just too many of us here that heard that and look where we are....

The deal with the pathologist is straight forward, vital dyes, provide contrast to things which are so thin and transparent that if they were not colored you would not see them. Other dyes used on these tissues like Toludine Blue, are actually absorbed more in certain parts of a cell, like by the mitochondria in the cells that have damage to the dna than others. The biggest give away in cancerous cells is that the nucleus is larger than normal. It is so much bigger that the lowest magnification can be used to make that determination.

But you can't read answers into the comments that you have heard from them so far. Until the pathologist issues his report, these other docs are guessing as much as you are.

I totally understand how the anxiety makes you want to weigh every word, every expression,etc. Just be careful when you do it because your interpretations can be way off base and make your anxiety higher.

At my job, we do a lot of urine samples to test for drugs. Sometimes it comes back positive or negative right away. Sometimes, it comes back as 'pending."
I know pending can mean anything from heroin might show up to the lab guy didn't have time to get to it. But I have watched many anxious parents be sure that pending means something is wrong...only to find out it was nothing.
You are doing the right thing for yourself by being vigiliant. As hard as it is ---try to be as calm as possible till you get the results.

First, Mr. Brian you are an awesome human being and so helpful, just wanted to say that.

But real quick, I remembered what the oral surgeon told me that stuck like glue. When she looked at it before my biopsy she said and I quote " I will be honest with you Nathan, I dont know what that is?". And went on to tell me that when they are in school to become doctors,surgeons,EMT and such that they have little if any training at all on the tongue. She said basically the final exam is throat, head and thats it. That I guess they basically skip the tongue, anyone else verified or heard that before? Because what messed me up so much was I was continously told " I have no idea what that is " and then the infamous " I wouldnt lose any sleep over it though,just keep an eye on it". So it was just so crazy, even got asked if I had been out of the country!?! So I prepared myself for a weird parasite living in my tongue and not this...Right about now, Id take the parasite.

Nathan

Again I wouldn't read much into this comment. The tongue is just a big muscle, not a piece of mystery meat. For sure it has lots of stuff on it like papilla an taste buds and even lymphoid tissue at the back and rear sides, but it is no mystery.

Remember the reason that they biopsy things is because visually THEY DO NOT KNOW WHAT IT IS. This is common. Only a look at the individual cells in the sample is going to hold an answer. Even oncologists that look at things that are cancer everyday, could not tell you with 100% certainty that anything that thy look at or feel is cancer. So I don't find the comment out of line, what I do find appropriate, is that rather than brushing it off as nothing, someone decided to find out exactly - in a manner that was not ambiguous what it is.

I am still waiting for my biopsy. I am certain it is cancer. As I think back on how it came to be this white lesion on my gum, at one time it was a sort of sore, then a lekoplakia type sore and then it condensed into this lesion. The sore and leukoplakia like substance was much larger than how it has ended up. It is as if it has condensed down into this much smaller lesion. Perhaps it has only recently converted to cancer and maybe I got to it early. I have no idea, but I feel certain of what it is and I am in full blown panic. I am almost not functioning. I have called my doctor for anti anxiety meds.

You cannot do this to yourself Texsun!

You have reason to be scared and panic, but you for one have to be the strongest in such a crazy situation. All you can do is wait for the biopsy right now, I would not waste days worrying until you have absolutely been assured it is cancer. Then " If " that is what it is, instead of falling apart like my family and I did, you pick yourself up and say " I will not tolerate this in my body!". We are all here for you no matter what the results are, but you cannot shut down, I know it is hard, but it is key to getting through.

I myself have just begun the journey, and at first wanted to quit, I found this site and popped on some music and got ready for war! And that is what it is in my eyes, WAR! Keep us updated, as I will do the same. Take care of yourself...

Nathan