I obviously need help, but would appreciate any commentary or suggestions from those with similar experiences. 44 year-old male, physically healthy, mentally toast. I am now into year four of having multiple mouth pain problems. I see two different ENT's and two different oral surgeons an average of a couple of times per year each. Clean bill of health every time.

The predominant complaint is my tongue feels as if it is swollen on one side (chewing side) and occasionally my speech is affected. The left side of my neck also feels strange, not so much pain, just a sensation of fullness without any visible signs. This used to be very sporadic but now is more frequent and the symptoms last longer. I have regular dental cleanings and have had both Velscope and Vizilite tests in the past six months. I have had a scope run down my throat. I have also had an MRI (with and without contrast), all normal. I drink too much wine and use smokeless tobacco once or twice a week. Literally, I go buy a can, and within an hour, realize what a moron I am for doing this in light of my symptoms and throw the can away. There has never been a visible sign of any kind until two weeks ago. The oral surgeon said that one of the big bumps on the side of my tongue was red and irritated. Velscope showed nothing. He sent me home for a month and said he would look at it again then. He also told me to lay off the breath mints, which I consume by the pound.

Here are my questions:

1. One of my oral surgeons (post-residency was in head and neck cancer) said that cancer will almost always originate on the surface of the tongue, etc. Does anyone have anything to add regarding the periodic pain and swelling in my tongue all this time with no visible symptoms?

2. I have tried to locate a dentist to do a brush biopsy before they hack part of my tongue out for a traditional biopsy and got no response from CDX. Are brush biopsies generally accurate or should I go ahead and bite the bullet?

3. I got the MRI to avoid the radiation of a CT or PET and I have always heard that MRI's are better for soft tissue imaging. Is that true?

4. How fast do these SCC's actually grow? If I get the "all clear" and continue to have symptoms, should I have it checked annually?

I visit this site regularly and treasure the resource. Sorry for the novel....it has taken me three of those years to get up the courage to write.

Sorry for your problems but at least you are paying attention to them. I was having pain with spicy foods on one spot of my tongue for about 6 or 7 months before a sore developed. The tumor developed and grew very fast for me...even though they said that OC is usually slow. Once it was visible it exploded in size.

Just by chance are you near Houston? MD Anderson is one of the best cancer centers in the world.

If I was you I would also slow down on the wine and stop the smokeless tobacco. Btw, what is smokeless tobacco? Is that something you chew?

When you say "very fast", can you give me a timeframe? Should I go back to the oral surgeon and demand a biopsy right now? If I can prevent its doubling in size in a month (not to mention the relief if it turns out to be nothing), why should I wait? I like the guy and he seems very competent, but it is not a life or death issuse for him.

When I say smokeless tobacco, I mean snuff. I just did not want to cross any protocol boundaries by being definitive.

Will someone at MD Anderson even see you if you have not been definitively diagnosed as having cancer?

My first external tumor doubled in size in about ten days according to some photos I took -- Second tumor was inside front of tongue and was swelling tongue, but hard to figure size -- Third tumor was on BOT and seemed to be slow.

Push for a biopsy -- Better to know bad news sooner!

It went from barely seen to a tumor of 4.778cm in two/three months. My tongue only hurt in one spot and that's were the tumor developed. My tongue was bothering me from November 2007 to April of 2008, late April to early May I noticed a small sore...like a canker sore the size of a pea. It seemed to explode in June and July. My surgery was August 13th, 40% of my tongue was removed. I'm not insinuating anything about your scenario but being "involved" in your oral care is a must...I wouldn't ignore anything, stay on top of it. I would stop smoking and drinking for the time being. There are many reasons for mouth issues.

A biopsy is the only way to know if something is cancer.

Harry,

I have to disagree that "...cancer will almost always originate on the surface of the tongue." Cancers start in the deeper layers and work their way to the surface. You should watch the video on the VELscope site and also read other links on the home page for a better understanding. http://www.velscope.com/

I wouldn't get a brush biopsy. The scalpel biopsy is the gold standard and the only way to really know if something is a squamous cell carcinoma. A biopsy does not require hacking away part of your tongue. A small area is removed, sutures are placed and it heals rather quickly. The stitches can be annoying and the whole thing can be uncomfortable for a few days. It's really no big deal.

Hope this helps you and you have to stop buying, using and then throwing away the "smokeless" tobacco.

Jerry

Thank you for the advice and this may be a stupid question, but how do they determine where to take the biopsy if there are no visible signs? Will the entire tongue contain cancerous cells?

In my case, the whole front of my tongue was swelling, so he did a punch biopsy from the underside.

Not to dissuade you from getting the biopsy done, but the surgeon said it probably took years for my first tumour to develop. I have never heard of a brush biopsy, but if I were you, I would go to a cancer center and ask for a full biopsy to rule out cancer. Tell them you "know how they like to be thorough and catch things early".

I would expect they would take the biopsy from the area you tell them is sore. One piece of advice there is that you should be SURE that the cancer dr. or oral surgeon knows EXACTLY which area is sore. With my very first biopsy - the oral surgeon biopsied the wrong spot. I pointed out the spot with my finger but now wonder if my finger obscured his view! Either that or he was an idiot.

Welcome to the site - lots of great info here.

Donna

oral surgeons are not going to be eager to biopsy something that they cannot differentiate in some manner from the surrounding tissue, and the brush collection system is tiny and only collects from very small spots. If you have a spot that is discolored - light or dark, is hard (indurated), is raised above the surrounding tissue (exofitic), is ulcerated, or is textured differently than the surrounding tissues.... AND has persisted for more than 14 days, biopsy is a likely path to take, to get a black and white answer.

The study that I was in at Ohio State did a brush on me every visit. This was after surgeries. It gives them a way to make sure there aren't any intruders. Just like a guard dog. Lets them know if trouble is approaching. It's works as a safe guard. Nothing to it as far as pain or anything.

You mentioned in your initial post that the surgeon saw a red and irritated area. I assumed that this was the area that needed a biopsy. If that area is still present after 10 days to two weeks, it should have a biopsy.

Jerry

Thank you! Is a negative soft tissue MRI with and without contrast a reliable confirmation of no cancer?

Harry:

Im not too familiar with the MRI as results for not having cancer. My experience is only a biopsy of the tissue will tell for sure if its cancer.

The only way something can be determined if it's cancer or not is through a biopsy.

I picture myself, primary surgeon, a couple of residents, etc, all looking at a recent CT scan which does not show a sore that won't heal and thickened flesh on the inside of my throat at BOT, but it is there and a biopsy confirms it to be SCC. Radiologist didn't see it either. In this case, it did show on the MRI... The tools are not infallible.

Thank you for the input everyone. I have found some interesting articles regarding detection of oral cancer using various imaging types. I went back to the oral surgeon who said the earlier area/spot was not distinguishable enough to biopsy. Again, this guy has several years of H/N cancer experience. My tongue symptoms are getting worse, painful and more frequent. Went back to one of the ENT's and he did a thorough exam of my tongue and ran a scope down my nose/throat to see the base and said he didn't see anything. I understand the suggestion to biopsy, but I wouldn't know where to tell them to cut and they said without a defined area, nerve damage is a real possiblity. The one positive note is the swelling on the left (chewing) side of my tongue seems to have subsided over the past few days.

The first ENT dr we went to ran a scope down jim's nose/throat and everything looked good, but his tongue was tethered down causing his speech to slur and it was hard to eat...the first ENT dr. sent us to Pittsburgh as the scan showed something was going on. What did the doctors say it was ? It's not normal to have those symptoms and noone giving you a diagnosis. It may not be cancer at all, but it is still something...Keep us posted. Claudia

Its been a month now since you said the problems started. How about finding another doctor who is familiar with oral cancer. An ENT, or possible an oral surgeon, either one who treats many OC patients on a regular basis. Just because the doc said he has several years of H&N cancer experience doesnt mean he is overly familiar with it. Maybe he sees one a year. My ENT currently treats 5 people I know who have or have had oral cancer, and thats only people I know. Im sure he sees many many more OC patients weekly. Your doctor should be able to identify what area needs the biopsy. Best of luck, please keep us updated.

For example, the surgical teams at UW Med Center do three-four free flaps a week! A couple of years experience by one person just doesn't compare.

Not arguing about the qualifications of my oral surgeon, his comment to me was prior to starting his local practice, his speciality training and practice was in head and neck cancer for several years. I don't know what that's worth. I had another MRI today with Fat suppression which is supposed to be the best for detecting oral cancer out of CT, PET and standard MRI based on my extensive research.....since I can not focus enough to work any more. Results tomorrow morning. I am blessed to have some experience and connections in the local medical community and have no tolerance for waiting.

On a side note, in spending a lot of time on this site, I would urge everyone to be assertive when scheduling tests. I called three different imaging centers and my first question was how quickly I could get in and how quickly I could get the results. Their attitude was totally different when they realized that I was not just going to use whatever center my doc wrote the orders for. I got in within 24 hours and was assured of the results within 24 hours. Having owned a medical facility, I can assure you that despite this being life or death to you and me, medicine is a business. I am not demeaning the medical community, but they are conditioned to give worst case scenario expectations on timeframes and then seem to adjust their performance accordingly. When you give them an opportunity to compete and excel, they will usually perform beyond expectations. It is simple human nature.

As I mentioned in my original note, I have repeatedly seen two different oral surgeons and two different ENT's over the past three or fours years, one of each in the last month.

If the MRI is clear, I have to make a decision to dive into a biopsy without any real target. Not sure how that will happen, but I can not function any more.

A couple more thoughts Harry;

many of our cancers were painless. This seems more often the case when in early stages.

Second, have you considered a neuralgia issue that might be causing this pain? http://en.wikipedia.org/wiki/Neuralgia paragraph 4 mentions glossopharyngeal neuralgia. I am no doctor so I am really not able to offer any more detail.

I can imagine that you want resolution to this but poking holes in your oral cavity willy nilly will cause additional pain. likely will come up negetive (because there is nothing to see). I really doubt cancer would go unnoticed by that many Docs and scans either. I am sorry that we have not been much more help to you so far.

Thank you for the neuralgia info. Certainly sounds like a possibility.

The fact that I have frequent pain and irritation, and as you say most confirmed cases had no prior pain, certainly offers some comfort that it is not ominous.

One of the most intriguing, for lack of a better word this late at night, aspects of this affliction is the inability to easily identify and/or rule out or confirm a malignancy in situations like mine. Obviously, having one's entire tongue cut out and biopsied is not an option.

My gratitude for this community is substantial. Your participation after this long serves as a source of comfort and I imagine a real inspiration to those fighting the fight.

Harry, in my case, the swollen part of my tongue was clearly down front, so my ENT did a punch biopsy from underneath into what he felt was the harder tissue -- This revealed the SCC with no need for any scan; the subsequent scans being used to determine the extent and base for a surgical plan.

I had no pain from the tumor itself, but the entire area was swelling and became sensitive enough to the point where I had pretty much gone back to a liquid diet because chewing and swallowing were becoming a chore.

My next outbreak was on BOT and was sensitive to the touch, plus was giving me ear aches -- It was clearly visible but even going back and looking at a CT scan from several weeks before, it pretty much didn't show (My surgeon, his residents and the CT radiology doc were all looking with benefit of hindsight path report of SCC and still couldn't see it -- However, it showed clearly on an MRI, on which my latest free flap was based).

BTW, the UWMC imagery dept is using a GE machine that was getting twice the number of scans in one take compared to the Siemens used at my former scan center.

Harry, I was contacted privately by another member that reminded me in their case pain was the first symptom. Here is my reply to that experience:

I know that there are almost unlimited ways that our cancers present themselves.

Some do have pain early too. Quite a few though, don't. My thoughts to him (Harry) rely heavily on A. the time he has been having this problem, and B. the fact that he is being seen by several
Docs and had a significant battery of scans. Over the amount of time, if cancer were the problem it probably would have grown to a point of being dectectable.

I would not tell him (Harry) that this couldn't be cancer either. One thing I've learned by being on the OCF forum is that this SCC can be sneaky.

I am adding this reply to clarify my thoughts. Not to eliminate cancer as a possibility but to introduce other ideas to help. Obviuosly, you are on a cancer forum and going to hear a lot about cancer. I think it wise to remember (out loud) that there are other thing that can cause pain. That does not mean I claim to know that this is or is not cancer.

Harry

My Base of Tongue cancer tumor was estimated to have grown slowly for about 7 years. Zero symptoms except two years of misdiagnosed ear pain. In all the subsequent MRIs, PET scans and CT imaging studies, nothing ever showed up on the tongue's surface just the BOT tumor and left neck lymph nodes. I have no medical expertise just experience, but this time the tip off to my recurrence was a "swollen tongue" but just on the left side. Luckily, I did develop a noticeable lump under the skin so I could and did get a biopsy yesterday. One thing I learned from this forum is that sometimes the cancer is very very slow developing and not detectable readily on imaging studies. I hope you do not have cancer, but if you do, it sounds to me like you will be catching it earlier enough to be "cured". Stage IV, not so much. Best wishes and good luck

Good luck with your biopsy results Charm.

Yesterday's MRI results came back negative this afternoon. I guess I should take it at face value and be thankful, but the apparent rate of missed diagnoses using imaging makes it all a little hollow. Tongue symptoms come and go throughout the day. Sense of fullness in my neck on the same side comes and goes as well. I guess the good news is that with all these MRI's, they don't subject you to radiation like PET/CT.

The thought of just continuing to see an oral surgeon and an ENT once a month for a complete exam, Velscope and periodic MRI's seems foolish, not to mention expensive.

I am going to try on Monday to get an appointment at MD Anderson and see if they have any different thoughts or approaches. The symptoms are all consuming and when they started three or four years ago, I would sometimes go for days and weeks with no symptoms at all, now it is virtually every day.

I know in my case that what one imagery system missed (CT with no PET) another caught (MRI), so I would personally feel OK if I had a battery of them.

However, you have symptoms of something that's affecting the quality of your life, so there's some personal urgency to get it diagnosed and treated so you can get on with the rest of it.

Don't overlook how successful it can be just to have an experienced set of hands feeling around there -- My most recent tumor was quite both visible and palpable once we started looking for it without relying on the CT.

Off to the CCC next week....

Charm - sorry to hear about the latest results. Your attitude is certainly inspiring.

I'm sorry, but I have to ask, did the new tumor show up on the MRI?

I am off to MD Anderson next week and am going to handcuff myself to the chair until I get an answer.

No cancer, lots of possible causes and options for solutions, but they all seem trivial in this forum. Certainly a huge relief, but after a long drive home, some thoughts. First, how incredibly humbling to sit in the waiting room on the head and neck center at MDACC. On my way out, the overwhelming thought was "God knew I was not as strong as these people must be, he knew I could not handle this".

The most valuable piece of advice I got from this forum was "do not pass Go, do not collect $200, go to a CCC". They got me in within a week and put an end to three plus years of needless worrying in two hours. Thousands of dollars, hours or my life and hours of worrying.

The doctors were not rushed, answered all my questions and, while they were not in any way judgemental or condemning, they were clearly not surprised at the lack of knowledge and inconsistency from the dentist, two oral surgeons and two ENT's I have seen over the past 3+ years. This is pure conjecture on my part, but I got this sick feeling while visiting about my frustrations that with the relatively small number of deaths, the fact that your average ENT or oral surgeon could go through their entire career and might miss one potential oral cancer if they ignore all but the most obvious cases, they might consider this an acceptable error rate. And besides, if they did, "that person shouldn't have smoked, drank, etc." Sorry, I have this basic problem with medical care in that if a GP tells every single patient to "go home and take two aspirin and call me in two weeks if you don't improve", they are by default assumed to be correct 95% of the time because the human body will cure itself in at least 95% of all ailments.

Sorry, I digress...

They said that MRI's probably would not pick up early oral SCC. Yes on nodes. Another interesting point on initial detection, all tongue cancers originate on the epithelium (surface) and tools like Velscope simply aid in detecting the very early subtle changes in the surfaces of the oral cavity, changes that they see enough of to pick up with simple visualization. These tools do not detect anything occuring under the surface.

I am very appreciate of the responses and welcoming by most of you and to those offended by my presence, I apologize for not meeting your standards for participation. I would think that any additional exposure and awareness for this cause would be worth the seeming drivel.

I feel this need to do something, but still need to figure out what the best use of my efforts would be. I would welcome any suggestions. Obviously, after sitting in the waiting room today, I feel sorry for the poor teenager I catch coming out of the convenience store tomorrow morning. It might be my highest and best use in life....harassing young tobacco users at 7-11. Having quit myself once a week for 20 years, at least I won't just be preaching.

Glad to hear that cancer is off your list! Better than a clean biopsy!

[quote=HarryT]
I feel this need to do something, but still need to figure out what the best use of my efforts would be. I would welcome any suggestions. Obviously, after sitting in the waiting room today, I feel sorry for the poor teenager I catch coming out of the convenience store tomorrow morning. It might be my highest and best use in life....harassing young tobacco users at 7-11. Having quit myself once a week for 20 years, at least I won't just be preaching.[/quote]

I try to avoid this unless I actually know the kids involved, although I am not always successful!

Reminds me of "Never try to teach a pig to sing; it wastes your time and annoys the pig."

Harry,

I'm glad for the "no cancer" diagnosis - I don't want to be a member of this club and I'm glad you don't have to join.

Wishing you the best!

[quote=HarryT]No cancer, lots of possible causes and options for solutions, but they all seem trivial in this forum. [/quote]

So what are the possible causes and solutions?

Take care,
Eileen

allergies, acidic irritation from fruits, cumulative irritation due to dental irregularities, excessive tongue movement either during sleep or simply unaware of it while awake, dryness, etc., all potentially applicable to my situation.

Solutions are what you would expect for each of these but would require narrowing the cause. i.e. allergy tests followed by cutting out the allergen. Also a mouthguard for sleeping.

Just the knowledge that it was not dangerous made it much easier to put it out of my mind today. I am going to start cutting out certain foods for a few days at a time and see how that works.

Excellent news Harry! Its very scary to go thru the process of thinking you may have cancer. Im so happy you are not going to need this forum. Consider yourself very very fortunate. Best of luck in the future

Close calls are the very best kind because you learn a lot!

I agree with Pete, the closer the call, the more it sinks into out thick heads. Good luck in the future HarryT

they did not hesitate when it came to a biopsy for my mom. It was the natural answer to the question of what it was....why do some drs push things off? Just the look if it?? Just curious!!

Certainly if a doctor sees enough OC patients they will see enough that they can predict the outcome with a good degree of accuracy. Noting that nothing can replace a biopsy but after reading so many biopsies and then relating that to what it looked like before the biopsy it's bound to have some recognition benefit. The Chief of Oral Surgery at Moffitt who was the first there to scope me, showed me my BOT on the computer monitor as he was scoping and told me right there "see this area, it's looks rough and I bet that's where your Primary is. That's the first place I'm going to biopsy tomorrow." Sure enough he was correct and my tonsils were saved from removal.