Hello all,

After reading the instructions to this discussion board (which is very good by the way, thank you so much!) I thought I would write a brief introduction of myself.

I am a tongue cancer survivor since 2005. Diagnosed with a small tumour in left oral tongue, I underwent partial glossectomy two weeks after diagnosis. The only treatment I had was this operation plus just a few lymph nodes (sentinels) in the neck. No radiation, no chemo. Cancer caught early. At the age of 30, as mother of a 1 year old child, what a blessing

After this I have been cancer-free for almost eight years now. So I am very lucky.

The cancerous process was caught early due to another problem in the mouth area. I went to the dentist to seek relief to a persistent pain in my mouth/jaw. In the inner dental arch area to be more precise. (In retrospect, I think this pain could have been neuralgia from an operation involving my third molars on that side.)

This pain was never diagnosed, the dentist had no clue. However, what the dentist did pay attention to was a large white patch in my left lateral oral tongue. I had not noticed such a patch and even if I had I would not have been aware of its significance.

The leukoplakia was kept in observation. After one year it turned cancerous, with a visible small crater-like bump developing on the tongue. At this point I had myself well informed and was kept in good check, so the process moved on quickly and I was operated when the tumour was microinvasive between T0 and T1 (classified as T1, however).

My surgeon said that it was only a matter of weeks before the cancer would have spread elsewhere in my body.

The tongue operation went well and my tongue healed quickly. No problems with speaking or swallowing, I have been almost normal ever since.

I have been blessed so I don't want to complain; but as it happens I have had one persisting problem with the tongue, which after all these years has now been getting bigger. I will tell about it a bit later.

With kind regards to all fellow sufferers,
Mariaxx

To continue on my situation:

It has been eight years since my cancer was operated. The operation was successful.

There is one problem I noted after the operation, however. There was a strange feeling underneath my tongue. It was not so much pain but more like pressure. It felt to me like there was something wrong with the technical result of the operation. In the operated tongue area, next to the lingual frenulum there was another frenulum-like piece of flesh formed in between the tongue and floor of mouth. This "frenulum number two" felt too tight. I could move my tongue very well though.

At the time I mentioned this problem to my surgeon, but he dismissed it by saying that in an operated tongue there are all kinds of feelings and pains here and there, this is normal, an operated area will never sense the same compared to an unoperated area. So I decided to wait and see as I had other things to worry about in my life as well.

It has been years and the pain/pressure feeling underneath my tongue has persisted, however. In the first years it came and went periodically, staying for some days or max weeks at one time. Then it could be absent for weeks. I had a lot going on in my life and other health problems, too, so I had to kind of ignore the pain in my tongue. In 2007 I was diagnosed with multiple sclerosis and for years when I mentioned the pain the docs put it down to having multiple sclerosis-induced trigeminal neuralgia. And I did, too. I tried carbamazepine (Tegretol) (used for trigeminal pain) but it didn't help at all.

A year ago this pain/pressure feeling under my tongue turned to being pretty much constant. There are no more weeks in between pain episodes like there used to be. I have taken pregabalin (Lyrica) but it too does not do much.

What I have done now is that I have talked with my surgeon and next week he is going to do a bit of reconstruction work on the tongue. The procedure is called V-Y-plasty. THis is to release the frenulum number two a little bit so it allows for more movement for the tongue. At least this is how I understood it. The surgeon has not been very clear about the issue. I asked whether this flap of tissue looking like a frenulum is an adhesion that developed after surgery. He said "sort of something like that" and that was it. I did not push for more information. I have known this surgeon for eight years and he seems always so busy and has the air of "look I'm dealing with big and complicated reconstructive surgeries all the time and this yours is a minor issue so please be gone".

I really hope this operation would solve my pain problem. I have had to resort to strong pain meds for this for a long period of time.

Only some days ago it was the first time that it occurred to me that there is a vague possibility that this could be a recurrence of the old cancer or a second primary. Based on the phenomenon of field cancerization, this possibility is always present, especially as I am/have been a smoker. The feeling of pressure under my jaw, pain in my floor of mouth, recent episodes of dysphagia and dysartria...

But so far I stick to thinking that this pain is a problem that will get better after the reconstructive surgery next week. After all, this pain first started after my partial glossectomy eight years ago as I described. And episodes of dysphagia and dysartia are common neurological manifestations of multiple sclerosis. So I think there is no need to worry.

Welcome and Congrats. Your experience will be an asset to this site and to the people that come here for guidance.

Welcome Maria,

You are very informed about all this cancer stuff. I bet the surgery takes care of the current problem. Also glad to hear when cancers are found so early and fairly simple treatments can halt them early.

don

Welcome to OCF! Its always nice to have another long term survivor find our forum and join. Congrats on your 8 years of being cancer free and also for finding your tumor so quickly. Its not everyone who is so on top of things that they find their OC when it is easiest to treat.

Sorry to hear you have some pain issues. Hope it turns out to be nothing more than scar tissue bothering you.

As far as your doctor's attitude goes, its too bad they dont have a better bed side manner. They must forget that they work for you. Ive seen this in many surgeons, they have the "Im saving the world" complex which makes them feel more important than they really are. I hope you dont let the doctors rushing you stop you from asking questions. Its your right as a patient to understand whats going to happen to you during the surgery.

Good luck!!!

Hi there it does sound to me like you have an adhesion... a few people here have had them when they've had a small surgery that doesn't require a graft. It's almost like the healing area grows an anchor to hold it in place. I would definitely ask maybe for a ct scan to determine if everything is okay in that area. I was at my dentist years ago. and he noticed a white patch under my tongue. He sent me to an oral surgeon who removed it and biopsied it. The results were "Thickened skin" almost like a callous as a had a jagged molar there. I healed and that was that. 6 years later my tongue began to get sensitive in that area. It was red and sore. but no lesion just red and sore. The filling fell out on that molar, and I had it capped. Then it went from intermittent soreness to always sore. I went to the dr. after dealing with it for 18 mos. (thought it was because the cap was rubbing on it) had the cap filed numerous times - anyway I was referred to an ENT who looked at it and said... well it's just red, but we'll biopsy it. The day of the biopsy he said it was just red, again... but that he didn't know where to take the tissue from as there was nothing noteworthy to remove. He said if he tried to remove all the red area that was going to be huge *the entire left underside of my tongue* So he just snipped a random piece (if he'd felt around he would have noted a firm area near the back - I thought it was scar tissue from where my callous had been). I have no idea if he even pulled from that area - but to be honest whatever it was was under the skin and wasn't visible.
Results of biopsy... inflamed tissue...
he said go home and check to see if maybe I could have the molar filed, and be tested for food allergies.

I did all that. Jump ahead 2 more years. I had the molar beside the capped one also capped and the pain increased 100 fold. Went back to my dr. told him I still had this issue. He sent me to another ENT... this guy looked at the area in question - still red, still sore and said lichen planus. But he wanted to biopsy it.

Came back as a tumor... and NOT A SMALL ONE. it was 2.4 cm long by 1.4 cm deep and was just beginning to break through the skin. It was inside my tongue.

Moral... this cancer can be aggressive but can also take a while to get that way. I'd clearly had the tumor for at least 4 years... it was considered "well differentiated" but just after my biopsy, I had a lymphnode blow up, within two weeks, it didn't show up on an MRI or two CTs but I could feel it and when it was removed it was not only cancerous but had moved through the capsulated area into the skin around the node.

I would definitely have him take a good long look, and if you feel rushed or unimportant maybe get a second opinion... welcome and best of luck.

Thank you.

What makes me a bit concerned is that the feeling of pressure is there, in my roof of mouth, or submandibularly, even when there is no real stretching of the frenulum tissue of any kind as far as I am aware.

According to my understanding this would mean that the surgeon's theory is wrong. Which would make me a bit more concerned.

Cheryld: read your story with interest. Inside the tongue muscle - wow, that sounds scary. Gotta make some internet research on that. I wonder if the capping of the molar at the same time was just a coincidence. Couldn't figure out a logic there though.

Usually oral cancers spread so quickly. That's scary. And a patient's awareness and proaction can be a difference-making factor.

Mariaxx

Sorry, meant to say floor of mouth (not roof).

I don't know - I've attributed this to long term chronic irritation - it makes sense in that tissue can change over time if continuously irritated. (This is similar to lung cancer) I was a vegetarian etc, very healthy - maybe my immune system was strong enough to slow the process.
I think even a small amount of movement of your tongue could affect the feeling in the floor of your mouth.
I would still have it watched carefully.

Hello,

Just to update you on my situation. I was operated at the end of May. The V-Y-plasty was a minor operation, a quickie done under local anesthesia. For some weeks, I had to take pain meds, as the area was hurting a lot, just like oral operations usually do.

After the operation, there developed a problem with the healing of the scar in my mouth. A bump starting growing at the root of the scar. In that point I think the sutures collapsed - sorry, I don't know the right word in English - and a wart started growing outwards.

The bump grew bigger and bigger under my tongue, it was really a big one. It was in place there for several weeks. I visited the emergency room where a surgeon took a look at the bump. She said it didn't look suspicious to her, but that we would take another look after a month to see the bump again. She said it could be a hyperplastic enlargement, kind of a reaction to irritation produced by the operation or something, in which case the bump of tissue could start getting smaller, too. The bump had grown fast, in three weeks.

I was worried. And I must admit I didn't know if I had contributed to the problem, because I hadn't stopped smoking during the time of the operation. I do not smoke much, a few cigarettes daily, but I realize I should not have smoked when the operated area was healing. Of course I know smoking irritates the oral mucosa. What can I say :-(

1,5 weeks ago I decided not to touch my cigarrettes. For me it has always been really easy to quit and I have had long periods of not smoking or only a bit of it. Although it's an addiction, a bad one, in the sense that in the long term,I have never been able to start living without tobacco since I first inhaled when I was 15 or so.

What has happened after this 1,5 weeks? The bump started getting smaller. It has miraculously almost disappeared! I am so glad! I was almost afraid that the bump was a fast-growing oral cancer. Or, alternatively, the bump would stay there and would have to be biopsied and maybe there would develop another bump, and so I would end up in a series of operations, which of course would not be good for the mucosa.

I have no idea if taking a break in smoking had such a fast positive effect on the bump. I wonder.




With kind regards,
Mariaxx