I originally suspected a major apthous ulcer, but after seeing 4 different Docs and Dentists about this over the last 2 months, when I first noticed it (mid-June 2011), it is still not healed. The ulcer is surrounded by a thickened "white" tissue, and is on the right side of my tongue, next to my back molars. The spot does not hurt at all, not even when rubbed, though it can be a little sore in the morning if I have been chewing it while asleep. I have been putting a steroid dental paste on the spot by prescription the last week, and also doing a swish and spit with a Nystatin anti-fungal solution, as my ENT wanted to treat it as though it might be fungal. I am an insulin dependent Diabetic, so that does make me susceptible to fungal infection, and makes me a slow healer. The spot seems to decrease in size, or "close up" a little bit, during the day while being treated, but then the next morning, it appears back to the same size, as though I am chewing it at night, and preventing it from healing.

Anyway, I am scheduled for a biopsy tomorrow, and having read a LOT about mouth cancer being a possibility, I am scared out of my mind. I have never smoked or chewed tobacco. I'm not a big drinker. Both my brother and father smoke like chimneys, and are healthy! I am 40 years old, with a young daughter about to turn 4. I am seriously scared of dying. And with these mouth cancer "treatments", it seems the treatments are almost as bad!

Taking most of your tongue out? Cutting around the outside of your face to access the lymph nodes? Radiation that hurts your teeth so they may have to be removed? And then going through all of that and it re-occurs often?? I know I should try to be positive, its what people say, but that is against my nature, which has been strongly negative my whole life. I could not be more worried, nor more upset.

I already suffer depression and take Cymbalta 60 mg once a day, for the little it does. I am just so scared. I am praying for a "good" biopsy....just praying.

By the way....I meant there to be a question....sorry I got carried away a bit.

I guess my question would be is it absolutely necessary to take so much tongue out? Why?

Can't they just cut out the damn lesion?

Hi There

Personally I think the not knowing is very frightening, when you get your biopsy results, whatever they may be, I'm sure you'll be fine and handle whatever life throws at you - somehow people always do! I'm sure someone more knowledgable of your sort of condition will be along soon to offer you more help.
Good luck!
Vicky

Hi MitchMitchell

Firstly I'd like to say that although you have these concerns, it may not necessarily be cancer. The conclusions of the biopsy will decide that.

Secondly, I'd like to add that like so many other people on this forum I have also gone through the necessary surgery and treatment that follow on from being diagnosed with oral cancer.

Although its certainly not a pleasant experience at the time, there are many of us who go on to live good quality lives. In fact, despite of having half my tongue removed and rebuilt, which resulted in some visible scarring and a slight lisp I don't have any other outwardly noticeable signs that I ever had it.

I agree, it does all sound very hideous and did to me at the time of my diagnosis, but hopefully your concerns will prove to be unfounded, so please try not to worry too much. The modern medical techniques available now mean that it isn't just about removing the cancer but also attempting to leave people with a good qualify of life afterwards.

Anyway, this forum is great for getting good advice, support and reassurance, but can also be quite scary as I first found. As Vicky sums it up - somehow you just find the strength to deal with it. Phew!!

All the best
Wendy

Hi MitchMitchell

You sound like me when my adventure started. I was of the impression that the doctors would just take out the tumor and sew my tongue back together. My own tumor was about 2.9 cm (about the size of my pinkie), yet the left side of my tongue was excised. Sounded a bit extreme, but in order to make sure that they got it all, they have to take more than they need.

Right now, the best suggestion I can offer is ease up on the online research; you don't need that stress, and the internet's stock-in-trade is the worst case scenario.

Like you, I'm not a smoker, and I don't drink excessively. My doc even said I shouldn't have it. Lucky me, eh?

I was extremely fortunate to get great docs at the University of Michigan, and my outcome has been excellent. As far as I understand it, my entire surgery, including lymph node collection, was done through an incision in my neck, so I have no facial scarring whatsoever. In fact, the dissection scar looks like a regular line in my neck. Don't worry about radiation and its effects until you know whether you need it, then discuss your concerns about it with you care team. Not all of us have recurrences, but it's always at the back of your mind.

If at all possible, please take someone with you tomorrow.

Where in Michigan are you?

Julia

I'm in the Grand Rapids area. I had my biopsy in Thursday afternoon, and I'm scheduled for the results on this Tuesday afternoon. I guess I'll know either way, which is good, but there is a huge part of me that would rather stay in the dark just in case its bad news. I don't want to hear bad news. I'm extremely worried. I asked my ENT, do I have reason to be hopeful that its not Cancer? He told me he thought I had very good reason to be hopeful. So that's something I guess.

I've got my fingers crossed for you. If it's not cancer, rejoice and celebrate with your little girl.

If it turns out that you do have cancer, remember that the quicker treatment starts, the better your odds. No, it's not fun, but it's got to be better than staying in the dark. We're here for you. The fine folks here on the site are willing, able and happy to help if you need us.

When you go on Tuesday to get your results, please don't go by yourself.

Julia

I am so lucky to say that the results of the biopsy came back "benign". I know that medical professionals must remain poker-faced, especially when the results could be something so serious as cancer, but I feel like so much of my anxiety came from their attitudes as I have been dealing with this over the last few months, except for maybe during my very last appointment, right after the biopsy was finished. In fact, they still don't know the cause, and the ulcerated area is now a much bigger area thanks to the biopsy. But I am truly relieved.

I want to say I have the utmost respect and admiration for those of you who were not so lucky to receive the result I did, and who were forced to fight - and courageous enough to fight - the Battle of your lives against this particularly evil form of Cancer.

The testimonies of so many of you here on this Board depict your Strength, and it is amazing. Don't know if I could be that strong, and I am selfishly grateful I don't need to find out right now.

I wish you all battling this disease the very best of luck, and a long life.

Congratulations! It took a lot of strength for you to keep going until you got a definite answer. I'm very happy for you and your family.

Long-distance high five!

Julia