Hello,

I am new to this just hoping for some advice, I've had surgery for carcinoma in situ on my tongue. I found out today they did not get all of it, but it is not invasive. He is keeping a close eye on me month to month but no new surgery is set, my doctor wants to wait until it heals so he doesn't have to cut as much out, which I completely understand. I'm only 24 and wanted to know if anybody has had anything like this.

Thanks!

My tumor was localized as well, but they got it all the first time (knock on wood). Did you have a graft?

They took about an inch around and 2 mm deep out, but it still hasn't progressed past the first layer of skin, is that similar to what you had.

That sounds very conservative. I believe most people here who have had surgery have had much more than that taken out. I personally had about 40-50% of my tongue taken out, which is honestly not as scary as it sounds. I'm just about a month post op and I'm already at a point where everything I say can be understood clearly, it just sounds like I have a lisp. The carcinoma on my tongue did not cover 40-50% of my tongue, but they wanted to be aggressive and make sure they got all of it. I'm surprised to hear how conservative they were with you. If there is no surgery being planned to remove the rest, I would think there was another plan of action since sitting around knowing the cancer is there and doing nothing doesn't sound logical. Have you thought of getting a second opinion?

I actually really trust the surgeon, but wouldn't rule it out, I do have an alpt with a cancer center coming up. The csncer on my tongue that was visible was only about 1 cm wide, how big was yours?

I never actually asked the measurement. If I had to guess based on what I saw and pictures I have, I would say it was 2.5 - 3 cm. But it also grew to that size very rapidly. I noticed it in January and it was easily around .5 cm and had no pain. It stayed that size for months. Beginning of May it was maybe 1 cm, then 2-3 weeks later it was around 2 cm, then a week later I went in to have it checked and had the biopsy and everything done. But I would say a good estimate would be 2.5 - 3 cm, of what was visible to me in a mirror and pictures, I'm not sure how far back it may have extended slightly out of my view.

Welcome to OCF!

The watch and see approach can make a patient a nervous wreck. Its really difficult to sit around while recovering and not worry about it returning when you know the margins werent clear. If you havent already done so, seek out another opinion at a top cancer center. Im sure you will hear from a couple of our members from Canada who are more familiar with whats available to you there.

Best wishes!

I had biopsies of the tongue, but was not cancerous. Were you or are you a smoker, chew tobacco, any other risks types for cancer, such as alcohol? I would want to have an endoscopy of the aerodigestive tract to check for any other involvement, in addiction too, a full body PET/CT scan first. As mentioned, seek another opinion, prefably at a CCC. Personally, I don't like the watch and wait approach when there are positive margins or any cancer for that matter, which really can go anywhere. When they did a RND, surprisingly, cancer was found in my neck muscle. in another surgery, I had positive margins in the cervical neck, a different area, under different conditions than yours, but they had to go all out on me with surgery, rads, chemo again. Good luck.

I agree with everyone else. Oral cancer, especially HPV-, which yours would most likely be due to it's location, is NOTHING to wait and see with. It's proven to be very aggressive and not easy to get rid of under the best of treatment conditions which yours have proven not to be so I would quickly seek the opinion of a CCC.

Casual drinker, smoked for 4 years, no chewing Tabacco. Thank you all for the opinions I will look into it, one thing I did not mention is that he said it was displasia and not carcinoma like the spot removed.