Hello:

I will start off by saying, thank you! I appreciate the time to consider what I'm outlining below. Also, if this isn't the correct spot, please feel free to move this message. Thanks.


I am a 40 year old male that’s in good health. I smoke an occasional cigar in the summer months on the golf course. I drink craft beer 3-4 nights out of 7, but not to excess. Other than that, I drink 2 cups of black coffee a day and at least 80oz of pure water every day. I work out 5-6 times a week for an hour each time. 3-4 workouts a week are vigorous – I will burn at least 750 calories, as indicated by a chest strap. I don’t have a history of cancer in my immediate family; however, my dad’s father did pass of cancer back in the 70’s. The type of which, I’m not certain – it was an organ based cancer, as much of it I know, anyway.

About 20 years ago, I had a small lump removed from the underside of my tongue that was discovered by my dentist. The lump was benign and, I believe, the result of a clogged salivary gland. It’s been so long, and I’ve had no additional issues, that I really can’t remember and the doctor is no longer around. When that procedure occurred, I lost feeling in the tip of my tongue, slightly to the left. I’ve dealt with it since then and it’s never really been a major issue. I notice it, but it has not impacted my daily life in a major way. I should also note that I’ve suffered from canker sores all of my life. From as long back as I can remember – my father did, too, until he retired from work. I’ve noticed they come on with stress. I take a heavy dose of B12 and Lysine and it seems to help. I also take a fish oil supplemental and a multi vitamin, daily. The B12/Lysine cut it down to the point I only have about 4-5 outbreaks a year and, when I do, they only last about 5-7 days. I never get them on the outside of my mouth.

About three months ago, I was dealing with a lot of stress in my life. I had a bad outbreak of two canker sores on my back throat area – almost on my tonsils. At the same time, I experienced neck pain/aching in the front – around my throat. It felt very stiff and made it difficult to swallow. When I would swallow, I felt a cracking sensation in my throat/neck – almost like cracking knuckles as I swallowed. About that same time, I also noticed my entire tongue became very sore. Like a sore muscle. It doesn’t burn, etc. – it aches and is hard to move, like an achy shoulder. I dealt with the canker sores, sore/ache in the throat and the sore tongue for three weeks. I used heat/ice and stretched and it made the situation manageable. After three weeks, I went to my GP. He said I had oral thrush and game me some meds. They did nothing. He referred me to an ENT we use with our children who we feel is very good. He diagnosed the canker sores and suggested I try a new med called Acyclovir – 400mg, 3 times per day. I’ve been taking that since the middle of September, 2017. During his examination, he also looked deep in the back of my throat with a magnifying device on his head. At the same time, he looked all through my mouth and said he saw nothing that caused him concern. I asked him about any lumps in the tongue, etc. He said nothing concerned him and that I shouldn’t be worried about cancer. At this time, I also focused more on relaxation techniques and the stress in my life moderated. I also started stretching more at the gym and throughout the day – my neck, that is. I noticed that the throat tension/aching subsided some after this. In the same way, my entire tongue no longer aches, which WAS the case a few weeks prior. Now, it just aches at the tip of my tongue.

Now what I am dealing with is an odd muscle that pops out of the tip of my tongue near where I mentioned it had been numb all those years. It is not a vein as it’s not purple colored. If anything, it has a faint white tone to it. When it pops out, people can see it if I show them, but it’s not large; however, it feels huge in my mouth. There is always a very faint red colored section on the tip of my tongue in that area where this occurs. But, here is what’s so odd. If I sit and type this message – no lump. If I have a phone conversation with someone, it will pop out. When it does, it aches and causes that side of my tongue to become stiff and sore – much like had been happening to my ENTIRE tongue above. I can also make the muscle pop out if I press that part of my tongue on my lower teeth. Or, if I stretch it to one side. By the middle point of the day, it becomes far more frequent relative to how often it pops out. When it does, talking forces it to touch the bottom row of my teeth and it hurts even more. The pain isn’t a sting or burning, it’s an ache and it causes my tongue to stiffen up. The biggest issue becomes my ability to speak. That area of my tongue becomes very sore and almost freezes – like a Charlie horse. It becomes very difficult to speak!

So, after I saw the ENT in September – above – I worked through the situation for a while on my own. I was stretching, relaxing, having massages every few weeks, etc. It seemed to help the aching throat/neck pain/tension, but not the tongue, really. It got bad again for me, so I contacted my dentist. He referred me to an oral surgeon. They met with me, examined my tongue and said they could feel the scar line from the surgery I had 20 years ago, but saw no issues with my tongue, floor/roof of my mouth. They also said they felt no lumps at all. I asked them if they would scan it to be sure and they said they didn’t want to because there was nothing to see – no lumps, or other areas of concern. I left and dealt with it a few more weeks and eventually had it flare up again and talked to my GP about having it scanned, tests for vitamin deficiencies, thyroid issues, etc. He told me he would do what I wanted, but he felt I was worrying too much about it. He felt like stress was what was causing the issues for me. I agree, I need to manage the stress and I have been. He referred me to another ENT for a second opinion. I met with them two weeks ago and he said my tongue looked find – felt it, examined, etc. Said he saw the red tip, but felt it was probably from me playing with it in my mouth, etc. He gave me some gel – Clobetasol Propionate to rub on the tip where the muscle pops out. It doesn’t do anything, really. It may numb it a bit, but that’s it. He said he really couldn’t do much more because that muscle that pops out sort of comes and goes. Nothing to scan or biopsy was his contention. He did feel that area of my tongue and said he felt no lumps. I asked him if I should be concerned with cancer, etc. He said he didn’t see anything that pointed to that.

So, here I sit. I admit that I struggle NOT to play with this area in my mouth. I often find myself rubbing it between my teeth, biting it slightly, or pressing it against the inside of my bottom teeth, etc. without even knowing I am doing it!! Like a person that bites their nails without knowing it. It’s that subconscious state that occurs without you know it. I’m focusing on not doing that as much as possible. I literally tell myself – STOP MESSING WITH YOUR TONGUE, DUDE! If you bite your finger all the time, it’s going to be sore – duh!  I also notice that this issue doesn’t manifest itself in the morning. When I wake up, that tip of my tongue is numb, as it has been for 20 years, but it’s not until I start talking that the muscle pops out and my tongue gets sore.

My GP is worn out with me – basically punts me down the road. I’ve been to two ENT’s, my dentist and an oral surgeon. They all say they feel no lumps and see no issues with my tongue/mouth. But, I still have this odd muscle that pops out of my tongue from time to time. When it does, my tongue gets very sore and it becomes difficult for me to talk. I talk for a living, so you can imagine the compounding effect of the stress that creates in my mind. I.E., if I can’t talk, I lose my job, etc. It’s a mental mind game that’s simply not good. I continue to focus on relaxation techniques – stretching, time away from work, life, etc. I also focus on continuing to go to the gym, eat well and stay fit and active. I haven’t lost any weight; candidly, if anything, I’ve put on a couple of pounds. My cholesterol, blood pressure, BMI, etc. are all fine.

So, where do I go from here? Do I force the ENT to scan/MRI my tongue and take some blood samples? What if they won’t? I mean, can you DEMAND they do something? I’ve basically met my deductible for the year, so I’m inclined to do something in the next month if I decided to do that. I have another appointment with this ENT on Friday, 12/1, to review how well that gel was working. Ahh, not at all, really.

Thanks for taking the time to read my story. I appreciated any insight you may be able to give me.

Thank you!

Thank you for taking the time to write such a detail history of your situation.

First, cancer does not present itself by coming and going. If someone has a cancerous tumor, its always present and will grow over time.

I suggest seeking an ENT who primarily treats oral cancer patients, not children. ENTs whose main clientele are children usually are not the best source to treat adult mouth/ear/throat/nose issues. They usually put tubes in kids ears and do not get into serious complex adult problems. An ENT who specializes in treating oral cancer patients usually is most experienced in detecting oral cancer or other non-cancerous problems.

Eating healthy and exercising are great, positive things to do. Im sure you feel great, have tons of stamina and are in tip top condition. Unfortunately those things alone do not protect you from getting cancer. Also, blood work will not detect oral cancer so dont waste your time and money. To determine if you have oral cancer, you need a thorough oral cancer screening and if a sore is present, a biopsy. With a biopsy, that will tell you exactly what you are dealing with. At that point your doc should be able to give you some options on the best care for your situation. Hopefully your "muscle" and tip of your tongue will not be anything serious. Please let us know how you make out.

Best wishes!!!

Thank you so much for your reply.

The challenge this ENT presented me with is that he has nothing to biopsy. Because it comes and goes, he said he would have nothing to biopsy until it was there all of the time. Your point is valid about cancer - it doesn't come and go. I appreciate that and it calms my nerves in that space - i.e., it's likely not a cancer. From there, I wonder what it is and how it's to be diagnosed and treated? There is a strand in my mind that wonders if this is from the surgery 20 years ago and it's surfacing now as an odd damaged nerve/muscle. I'm not sure.

I'm sort of confused on where to go from here given there is nothing to biopsy, but I continue to experience the lump and the ache associated with it. That, which is most concerning, leads to my inability to speak clearly.

Thanks again!

Ask a referral to a speech therapist / occupational therapist. This is a person who I see after the surgeries I've had on my tongue, to help me regain better speech and to ease up the scar tissue from the surgeries ... she helps with both my tongue and my neck (because I had surgery there too, and radiation damage). If there is still scar tissue from 20 years ago, that in itself could be causing you problems. There are, believe it or not, massage and stretch techniques that a good therapist could show you to work on that. Not only would this help your stress and give you something to do, but the right therapist might even feel something the doctors have missed, if they've gotten frustrated to the point of impatience. I've been really blessed with the therapist I see ... she's amazing and has given me help on so many things that I wouldn't have expected. And it's a route you haven't tried yet, and with the scar issues, it's something that would likely even be covered partly by insurance. Worth a shot.

Good luck! It's probably not what you are afraid of, but you still shouldn't have to keep suffering whatever it is.

One other thing I forgot to mention earlier. Maybe this will apply to your situation? I have a strange issue that happens to me once in a while, usually only when I go outside and its very cold out. In the winter it may happen 3 times a day or once a month, its very random. Out of the blue, my tongue begins to hurt really bad, then I feel like I can not control my tongue and it turns white/greyish. My tongue stops working almost like its paralyzed making my speech barely understandable. For me, its due to poor circulation and cold weather. In my case its probably one of the many after effects from having radiation treatments. I was thinking maybe you have a circulation issue as well due to the scar tissue from your surgery 20 years ago? Try to pay attention to every single thing when you have an "episode". Are you inside or outside, are you cold or is it cold outside, what were you doing just before your tongue got funny, etc. It took me a long time to figure out what was behind my mouth issue. Im telling you to help you get to the bottom of whats going on with your tongue.

Good luck!!!

I appreciate the insight - thanks! I've been up this morning for 30min. and there is no pain and no lump. I'm trying hard not to mess with my tongue at all for as long as I can during the day. Talking, of course, wouldn't count. Haha. But, I want to see if there is something to that biting, nipping, playing with your tongue that aggravates it. Seems obvious, I know. But, that part of my tongue was already manipulated 20 years ago, so it's a constant source of attention in my mind now that it's giving me issues - i.e., is there something wrong, etc.

I'm trying to figure out what to do with my ENT visit this coming Friday. I feel like it's probably getting to be my last chance to have something done this medical billing year. I.E., if a scan did make sense, now's the time to do it before my deductible starts over.

Enjoy your Sunday and thanks again!

As an update and a hope for guidance...

I ended up cancelling my appointment to the ENT I mentioned above. My condition was the same and I didn't want to spend the money as I wasn't convinced with his approach. So, I go through the Holidays and the condition gets worse. Let me explain: I have a very small (dry pea sized) bump under the tip of my tongue on the left side that is now there basically all of the time and is soft in nature - feels like a flap of skin, really. If I lift my tongue up and to the right, the bump pops out a bit more and becomes hard - like a bulging muscle in your arm when you flex. If I stretch it to the LEFT and up, I feel a pulling sensation in that area that hurts like a small shooting pain - like a rubber band pulled too tight. All of this, so far, is manageable, candidly. Not ideal, but given what it could be, it doesn't cripple my day. Where it is not fine is what happens when I start to talk. The more I talk, the more the muscles in the tip of my tongue feel tight and stretched. It is at that time that the bump also gets very hard and feels tight, too. With time, my entire tip of my tongue ONLY on the left sized feels huge and impacts my speech. Keep in mind, this is the same side of my mouth where I lost a small bit of feeling from the surgery I had - mentioned above - 20 years ago. I have had NO issues in 20 years, other than some numbness in that area, but it's been so very small - the area that is numb.

I ended up going to a speech therapist right at the turn of the year. They gave me some exercises to do and referred me to a new ENT that specialized in more than kids tonsils. I met him yesterday and spent and hour with him. He was interested in helping, but said he didn't know what it was. He did confirm that he didn't think it was cancer. He did speculate that my tongue is pushing into the bottom row of my teeth, which are very sharp, which has let to that irritation where the lump it. Frankly, the more that I look at it, that bump lines up right on one of my sharpest teeth down in that area. I admit I move my tongue around a lot in my mouth - stretching it, biting at it, etc. Especially when I'm talking as it helps relieve/divert some of the pain. I have a dentist appointment Friday to have those teeth smoothed.

Back to the ENT - he ordered blood work that already came back. All were normal, including the WBC count - basically in the middle. But, my Neut% was high - high normal was 70 and I was 77.8%. Also, LY% was low - low normal was 19% and I'm at 13.2%. My GP said he wasn't worried as the WBC count was good; also that I'm fighting what appears to be a head cold - chills, fatigue, etc. Thyroid (1.99), cholesterol, etc. was all good. So was my rheumatoid factor - <10. The ENT also ordered a CT scan that I'm trying to schedule now.

I try to remain calm, especially in light of what many others' here have going on. I struggle, mentally, with it as I need to speak for a living. That leads to my being able to support my family, etc. It races in my mind. I'm taking active steps to manage the process through these visits, but admit that I'm not doing a good job of dealing with it mentally. I don't really know where else to go/turn for guidance and assistance. I feel like the CT scan is a start, but will likely lead to the need for an MRI - insurance requires the CT first, etc. I'm sure you all know how that goes. It's one step at a time and I also appreciate that.

I can't help but think to myself - it feels like the muscles in my tongue are all twisted in a knot. The left side of my tongue feels larger than the right and the ENT noticed that on his own and agreed. My biting, twisting/contorting it is not doing me any good and I know that. It's so very difficult to stop - especially when it cramps up while I am talking. I'm looking for relief when that happens.

I appreciate any guidance you all may have on where to go to next should the above not pan out. I keep things in perspective as best I can, but admit I'm worried about not being able to speak well enough to work, make an income and support my family.

Thank you for your time!

Im very sorry to read you are still not diagnosed after several months. As I advised in my original post to your thread... only thru a biopsy will you know for certain exactly what you have. Oral cancer does NOT show up in a blood test. It may not even show in a CT scan as that takes pictures. If I remember correctly, anything smaller than about the size of a grain of rice wont be visible. I know it sounds very small but if you think about how cancer starts as a microscopic cell, a grain of rice is pretty big. Hopefully your doctors will get to the bottom of your issues.

Try not getting too far ahead of yourself. The "what if" thinking will only make you feel worse and think negatively. At this point you havent been diagnosed with anything that could endanger your ability to speak or work. Take it one step at a time and hopefully you will find out soon whats going on.

Best wishes!

Thank you. The concern I have with the biopsy is that it comes and goes based on how I twist my tongue. I have some concern with him cutting into it if it's muscle. What happens then? He also told me that if I was fiddling with it now, I wouldn't be happy with how it felt after the biopsy. He said it the right way, but it caught my attention. The bump on my tongue is definitely bigger than a grain of rice. I just can't understand why it pops out when I talk and twist my tongue. At rest, I can see it, but just barely. My tongue just feels tight like a sore muscle when I talk. Very frustrating and concerning.

I do appreciate your input. I agree that taking it one step at a time is the best way to go. The ENT did call today to say they are waiting for the insurance company to approve the CT scan. Having not been through this before, the waiting is killer to me, too.

Thanks again!

As an update and a plea for some guidance....

It's been since November,2017 since I posted this. I've tried Acupuncture and other stress reducing techniques. The former actually released some tension in my tongue tip, but the lump has gotten bigger. I feel it all of the time and it drives me nuts - I play with it in my mouth constantly The pain isn't as bad, but it's definitely bigger. I met an ENT at the CLE clinic that looked at my CT scan and did an exam and said it's not cancer. He offered to shoot botox and cortisone in the tip if speech therapy didn't help. The stretching did some, but not a lot. In the process of having blood work done, I learned I have MTHFR, which is a gene mutation issue. In effect, my body can't rid of toxins well. Supplements are needed to keep me healthy - those are the extreme cliff notes. Folate becomes an issue as my body can't process it well. So, I need to take a supplement that has a lot of folate (avoid folic acid) and keep the B12 up. Interesting to me is that some tongue issues surround a lack of folate and B12. I almost wondered if this was all connected, but why would it impact only one side of my tongue? That seems odd to me. I bring up the MTHFR issue because botox is a toxin, so I don't know that putting that in my body/tongue is a good idea. I pushed away and asked for the cortisone shot and he balked. It was then that he basically pushed me away - professional, but I could tell he was more concerned with working on cancer patients. I get it. So I went back to my local ENT and he looked at my tongue and said it's bigger than it was 90-days ago. He suggested a biopsy, which I go under for on 5/25. I'm concerned as the tongue lump doesn't come out if the tongue is relaxed. But, it's always stiff in that area of my tongue. If I use my tongue, the lumps pops out and it's hard to move that portion of my tongue. It feels large, stiff and sore. I'm sure the biopsy will help, but I don't know what to do if it comes back as "nothing." My tongue is clearly bigger on that side, sore and stiff.

Would welcome any additional input. Thank you!