Referral for tongue biopsy

Hi, We had exactly the same as you, my partner was referred for biopsy and we were told immediately that it was 97% sure it was cancer!  We were astounded as did not expect it at all, no pain, no symptoms just small white mark on side of tongue.  That was last October 2024, had surgery to remove part of tongue in January and half neck dissection to remove lymph nodes,  margins and lymph nodes thankfully clear of cancer but signs of perineural invasion so currently doing 6 weeks of radiotherapy.  Waiting for results was definitely the worst time, the not knowing (we are also abroad so in a foreign language making things more scary!!)  

Please feel free to message me if you want to know anything, not trying to scare you just telling you our experience, good luck xx

Hi! Thanks so much for sharing your story so far. How has your partner found things since surgery? I'm so nervous about losing part of my tongue, but of course more scared of cancer itself. 

What happened to you and your partner sounds like what I'm dreading most about this Sunday's appointment - the prospect of the consultant being 97% certain, purely from looking at it. Was it really as fast as that - did they look at it and say that straight away? 

Okay, thanks for the update Nige.

How do you feel about it? Sounds like they're on the ball and wanting to rule out that possibility, right?

ScaredBrightonGuy said:

did they look at it and say that straight away? 

Maxfac and ENT look at these all the time and they can usually tell. 
I think being honest is better than saying, “Let’s wait for path results”

I agree, Dani.

Have we ever heard of a consultant doing the opposite and saying, "I'm 97% sure that's a traumatic ulcer, but we'll do a biopsy to be certain"?

Hi, Believe me we know how frightening and scary this is.  We came out of that room in a trance, not expecting to be told that at all BUT bow we are glad he said straight away and was direct as if he had said 50/50 maybe it would have been worse.  Not in a million years did we think it was cancer we thought it could be lichen planus and would need lasering off.  I fully understand how terrified you are of losing part of your tongue as was my husband but if it is that it sounds as if you have caught it early and it will be treatable.  I am terrible for googling everything (and still do) but I can assure you that most of the horror stories I read did not come true.  He is able to talk almost as normal.  He did not have any reconstruction.  he was stage 2.  As I said before the worst part is the waiting for results, we are in a foreign country, foreign language, no support whatsoever, no children, no family, he is 57 by the way.  We are totally alone.  I am here to answer any questions you may have, stay strong, hopefully all this worry will be unnecessary and you will be fine.  

I can only say from my experience 

I had an ulcer on my tongue after I had been discharged so sent a photo to my CNS, she showed my surgeon who said it looked like a traumatic ulcer but said he would look. He took one look and confirmed what he thought. No biopsy. He was right it had healed a week later once I had started using my night mouth guard again 

The answer really is if the consultant is not 100% sure he will get his pathologist to check. Don’t be afraid to ask if he thinks it IS cancer. Doctors generally are upfront about these things

Thanks for sharing that, Dani. 

Mmm, mouth guard you say. Got a recommendation there?

While on the face of it, this alleged ulcer is behaving abnormally by not healing, I can also tell it's getting bitten and raked across my teeth while I sleep every night...

Your dentist will make one up after taking an impression of your teeth. Best wait till you’ve seen your consultant. 

Thanks Dani.

You know what I like most about this mouth guard thing?

The way it supports the narrative I'm very keenly holding onto, that my ulcer really is just an ulcer that hasn't had a chance to heal because it keeps getting bashed by teeth every night...