Hi there,
I am new to this site, but feel fortunate to have found it!! I was first diagnosed with a leukoplakia in the left side of my tongue 10+ years ago. I was a social smoker and drinker- but nothing too crazy. Since the initial resection I have had 3 additional surgeries- the pathology has never come back as more than mild dysplasia. My last surgery was 6 mos after I had my first child, in Feb 2010. That surgery was performed by a Maxilofacial surgeon who was great- but was admittedly thinking that if the situation recurs- that he may be out of his depth. So a couple of months after the surgery I have been under the care of the physicians at Sloan here in NYC. They have not performed any biopsies in the past year- but checking me consistently every 4 mos. The doctor there told me that he was 100% comfortable with my trying to get pregnant again. Well of course- that is taking a while now too...
Before I last went into see my Dr at Sloan, I told him that my tongue had been sore and he warned that these tongue lesions have a tendency to flare up- but there were no obvious signs of cancer- despite that the left half of my tongue is fairly mangled from all of my surgeries. I am due to see the doctor again in a couple of weeks- but there seems to be another flare up. For instance if I eat something with a tiny seed and it gets under- it really hurts- feels like there is a knife to one section of my tongue...
Does or did anyone else have "mild dysplasia" that progressed to cancer and if so, in what time frame. OR- has anyone else experienced a very sore/ easily irritable tongue as just a symptom of many surgeries?

Thank you!
Sally

The lesions on my tongue started as painless leukoplakia when I was 19 or 20. Over the years, they would "flare up" with ulcers and sores that were biopsied and a couple of times my tongue was resected. They came back as mild dysplasia, chronic inflammation, leukoplakia, and a few other things over the years. It was always on the same region of my tongue. I was diagnosed with SCC in April this year and I'm 33. So it was about 13 years from the very first noticeable change in my mouth until my cancer diagnosis. My doc said these things do not always progress into cancer and that there isn't really a good way to predict which ones will. It sounds like you are doing the right things and your doctors are staying on top of the situation. It never hurts to get a second opinion if it will make you feel more comfortable.

Me too.. Mine was a leukoplakia 10 years ago... Was chronically irritated and red though the degree of dysplasia changed weekly. I was diagnosed this past December. I'd had to biopsies previously this past fall it got worse way more painful - that's when I had another biopsy. Msmac is right these things don't always become cancerous - but keeping a close eye on it is important! Good luck! And take cars!

Thank you for your comments. Was there a distinct level in discomfort from the times before your diagnosis and when you received the diagnosis?

I really just need this upcoming appointment to put my concerns to rest for a bit, or to deal with "it" whatever "it" may be at this stage- but I'd love your comments on pain level prior to cancer diagnosis.

You are both sound like strong fighters!!

For me, the area became a lot more swollen and because of that more painful. I let it go on too long because I was pregnant and thought it was just due to stress on my body. By the time my daughter was three months old, it had swollen too big to ignore and it was painful to talk or eat because it rubbed on my teeth. I still wasn't able to distinguish it from scar tissue and did not expect the cancer diagnosis. I think it's best to follow the guideline of having any sore checked out that doesn't heal after two weeks. That way if anything ever does progress to cancer, you can catch it right away. I very much regret waiting as it gave the cancer a chance to spread to my lymph nodes.

Your history sounds so similar! I think I would have had the same reaction during pregnancy. Especially since we all tend to be very healthy during pregnancy! Did your doctor say whether they would have been able to do anything during pregnancy?

Hey - mine wasn't swollen - just red and irritated - at I could feel what I thought was scar tissue from my leukoplakia removal years before ( it was a thickened mass - inside my tongue not on the outside though it became more irritated when I Ate, drank, and talked - acidic or hot foods were brutal - it felt like salt in an open sore. Very painful. I agree with msmac - more than 2 weeks have someone look at it.

I just had my biopsy done. The doctor said he didn't like the way it looked, so they went ahead with the biopsy to see what's going on. I get the results on Friday- but I have a bad feeling. While the doctor said he doesn't know- and the results could easily go either way- this occurrence feels much worse than what I've experienced in past. I've been through several surgeries already to remove mild dysplasia - and those were all quite painful.
Can anyone tell me if removal of a cancerous tumor is different? Is the neck dissection painful? Are the scars very large? I asked the doctor if he could tell me how long things could go on for the worst prognosis and he said 4-6 mos. Does that sound realistic to you all?

Thank you,
Sally

37
4 tongue resections over 10 years- always mild dysplasia
Biopsy 8/30

Hi there... My dr. Said the exact same thing to me! He didn't like the look of it. This was traumatic. he was right though. I too had a bad feeling - on some level I think you know. I have to learn to listen to my body! I'm getting better at it though.

The tongue surgery is probably a little different depending on the size of the tumor. If they are removing it with large margins, they may rebuild it. If they do it's a long surgery followed by time in the hospital, here in Canada protocol is 10-14 days. It's less so in the states I believe. Usually they want you eating here before you go home,

If they rebuild a part of the tongue you will have stitches possibly at the donor site as well. The neck dissection surprisingly enough was not painful, mostly I was numb and stiff. They may trache you - this was the part I hated the most. Pain is a relative term. I have a high pain tolerance. I had hysdromorph for 2 days post op aster that it was a few Tylenol threes. You may have arm and shoulder issues and need physio post op. Generally your tongue is swollen, and theres a lot of drooling... This subsides within a few weeks. I was able to eat well 20 days post op. Semi solids and solids, but I used water and put the food, pills (vitamins) In on my good side and had no problem.

It really depends on y and your pain tolerance. Good luck - I hope your biopsy comes back negative. And if you have any questions feel free to pm me! Take care!

Sally, as far as the biopsy goes, thats the only way to tell if you have cancer. I know waiting is difficult. Try to keep yourself busy so the time will seem to go by quicker. Dont worry about scars! Much better to have some scars and be around to tell about it. If you have already gone thru surgeries for dysplasia, I hope you are being treated at a cancer center. If not, please consider being seen by a cancer center where an entire team will take care of you. One good thing, not all dysplasia turns into cancer. Im a big fan of positive thinking, I think it makes things easier to deal with. Best wishes with the results!!! Hope they turn out that you dont have cancer.