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.