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.

Thank you! And yes- I am trying to remain positive!! My tongue just feels so differently this time- consistently painful. I guess knowing that the worst is treatable makes me feel better. I am with Sloan Kettering now. They are smart, kind & compassionate thus far.
I'll let you know what the result is when I hear back. I think a trip to the zoo with my daughter tomorrow is a great way to enjoy the wait!!

Thank you for sharing your stories. It's so helpful!

Sally

Hi Sally, as long as it is low grade dysplasia, you need not be too concerned as it is 100% treatable as the risk of low grade dysplasia transforming into high grade dysplasia and eventually cancer is low.

Hoping that it gets caught early.

Wish you luck.

Many of us here know how hard it is waiting for the biopsy result Sally.
Great idea to do that zoo trip and anything else to take your mind of things until you get the result on Friday.
I have had to wait much longer to get biopsy results including the last one earlier this year which was clear.
I am wishing that ALL CLEAR result for you too.
Gabriele

My positive result came back a day early. Partial glossectomy & ND is surgery is already scheduled for Sept 16. Doc said T1. Is the early stage diagnosis usually accurate after only a small biopsy?
Also- the neck drain that they mentioned being the need for a typical 2-3 day hospital stay- can anyone shed more color on this?

My husband and I are going in to speak with the doctor about everything next week- but I just thought I would pick your brains first.

Needless to say- I am an emotional wreck- but am dong my darnedest to stay positive & make sure that my head stays on straight to make sure that I know as much as I possibly can going into this!!

Thank you!

What did the positive result show? Is it squamous cell carcinoma? Thats what most of OC patients have, but there are a couple of other types of slower moving OC. Have you considered going for a second opinion?

A drain is normal for surgeries. It is not a big deal. All it does is to help drain the fluid which will help get the swelling down. I had a drain for most of my operations and they have been the least of my worries, its really nt a big deal.

I know you are afraid. It really will be ok!!!!! None of us patients have wanted the battle but we have fought hard and gotten thru it. I know you have been thru several surgeries which are not easy. You can do this! You have all the info on this forum to help you with whatever treatment your doctors suggest. The members of OCF are wonderful with giving emotional support. Dont worry, we are here with you!

Thank you! Yes- it is SCC. The doctor told me that it showed Stage 1 cancer. I am so scared.

Hi there... sorry the results were positive but it's an early stage thank heavens. The staging seems right, it's usually based on size and then lymph node involvement. Usually a ct or PET depending on your hospital, will determine that for sure. But if it's a tumor, based on size what I was told if it's under 2 cm then it's t1 2-3cm t2 - then if there are nodes involved the staging can change but usually it's more than one or two nodes that makes the difference. So he must have some idea of how large it is. Im not sure if you've had a ct, PET or MRI, that usually gives you a little more definitive. Mine measured 2.4 x 1.4 was a stage 2, I had one lymph node involved, that didn't change anything.

Try not to be worried. You're lucky you were diligent. It was caught early - Did they tell you if it was well differentiated, moderate, or poor? there are other things too like, was there peri neural involvement. Likely not since its so early on. These things along with the results of your neck dissection will determine whether they offer you radiation and chemo.

It sounds like they arent rebuilding your tongue, just removing a small bit. which is good, less surgery, and a quicker recovery. Take care!!! good luck...

I'm sorry that you got a positive result. It sounds Ike you caught it early. Like Christine said, the drains are no big deal. I actually went home with mine and had them removed a few days later. It didn't hurt at all to have them removed. My doctors said my tumor was T1 after my biopsy and that remained accurate after they removed the whole thing. The staging changed because they found 2positive nodes after the ND. I know it's scary but you are doing all the right things to get well. It's going to be okay.

Sally, sorry for the bad news but not to worry too much as it seems to have been caught early. Incisional biopsy (small biopsy) is usually very accurate. T1 stage means that tumor is small but doctor will arrive at final staging only after surgery and histopath reports for the samples removed which will include tumor, margins and nodes from neck dissection.

Has the doctor recommended CT/MRI prior to surgery?

It is not a complicated surgery - glossectomy is surgical removal of part of the tongue along with functional reconstruction, if required and your will have selective neck dissection where they will remove several nodes from neck and suspected structures for histopath analysis. Again, this is a functional neck dissection so it will not affect your head and neck movement though for couple of month you may have pain and may require exercise and/or physiotherapy. Drain tube is important to prevent fluid retention while your wound is healing. You may be in hospital for 3-5 days till nasogastric tube is removed and you are able to eat and swallow from mouth. You may have to go home with a drain pipe as it take few more days to reach minimal drain.

Once you have recovered from surgery and depending on histopath report of the structures removed during surgery, doctors will plan further treatment. In high risk cases, usually chemoradiation is done with weekly Cisplatin and 60 Gy dose of Radiotherapy delivered in 6 weeks.

Take good care of your health and try to regain weight post surgery to be ready, if further treatment is required.

Hi Sallyanne,

Sorry you had a positive diagnosis, but you caught it early and I'm here to tell you that over six years later, I had the same procedures that you are going to have and all is well. Don't be concerned about the drain. I too, went home with it and it was removed a few days later. The neck dissection was a piece of cake, but the tongue surgery was quite uncomfortable for a time.

I was back at work seeing patients 3 1/2 weeks after the surgery and the only lasting result of the surgery is that my neck is numb. No big deal.

Bear in mind that if you do have any positive nodes, it is likely that you will need radiation and of course your staging would change.

If you would like to talk about anything, send me a PM with your phone number and will get back to you right away.

Good luck.

Dear Sally, I am 36yrs old , Husband and Father of 3, I went through the same thing in 2008 and I am still here. Please don't worry, you will be OK, you are in the best hospital for this treatment and they will take great care of you. It will be uncomfortable for a few days and it shall pass.
You'll be in our daily prayers for your surgery.

Here is detailed info about staging. Its on the main pages of OCF where there is tons of useful info.

http://oralcancerfoundation.org/facts/stages_cancer.htm

Sally,

I hope surgery went well. Keep us posted on your progress. Your in my thoughts and prayers.

Take care,
Connie

So sad you got positive results but like everyone else said its a very early stage and VERY treatable. Will be thinking of you and sending strong healing vibes on the 16th! Best of luck! I'll keep prayers going that the nodes are all clear!