Toluidine Blue Stain question

Tim6003
Tim6003 Member Posts: 1,514 Member
in Head and Neck Cancer #1
Hi All.

I have a regular appt with my ENT tomorrow. He is very good though I'm not as endeared to him as much as I am my Oncologist. He always does a scope and finger exam so I am expecting that tomorrow.

However, a couple of appts ago (2 months ago) I had this raised spot / lump on the inside of my left cheek that I keep biting (it is directly where the two back teeth come together).

I pointed this out to my ENT and he did look at it and said "It does not appear to be cancerous, it appears to be where you bit your cheek and is now raised".

My problem is I don't know which came first (did I in fact bite that location in my cheek and thus created the "raised spot" or did I bite (and still do often bite it) because the spot was raised first (you get my point).

I accept that of course and it does not appear to have grown any...but it is still there and I have read (on this board in particular) where one individual had her ENT / Oncologist and even Radiologist look at spot and not determined what it was correctly only to find they were cancerous later after that indivdual "pushed" for a more thorough exam (biopsy).

So I called ahead today and left a message for my ENT's nurse via the switchboard operator. I asked if tomorrow in my appt I could please have a Toluididine Blue Stain performed OR a more thorough look at this spot since it is still not gone and in fact I still do bite it often.

So my friends, if he tells me tomorrow "let's wait and watch" I want to say "No". But I also don't want to offend or get on his bad side.

My question is two.

1. Am I being resonable to ask for something further since it has been there two months?

2. Would Toluidine Blue Stain be a good procedure to ask for or is there a better more accurate method?

Thank you,

Tim

By the way...I am feeling great! I now have NO pain days hardly at all. I have a stash of Ultram I rarely use. I have gone out into the Payette National Forest with my oldest son and sometimes the two youngest boys go along too and cut firewood AND SPLIT IT with my handy ax! I am trying to get about 4 cords of wood to get through winter and have managed to get 1 so far. My wife is impressed by my stamina (I must admit I am too) and I just love being out in the woods with my boy(s) gathering this wood. I eat almost anything I want (but I do have to chew, chew, chew and of course chase it with liquid as I swallow.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    Bite me
    Tim, I bite myself at least once per week in the area that you describe. The radiation has thickened the inside of my cheeks permanently and it's an ongoing issue with me. I have to slow down and chew very consciously which is not the way we are used to eating. My injury always appears like a blood blister and does resolve itself within a few days of me saturating the area with some iodine.

    Toluidine seems to be a very accurate way to identify dysplastic tissue by the way it reacts and changes color. A positive hit and your ENT can FNA right there in the office. A negative and you watch it till next time? Seems like a reasonable plan and you are right on top of it should it not heal in the future.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    Just kind of went through this myself
    Three weeks ago a raised, white patch arose on the top surface of my tongue, not where I could have possibly bit it. Of course, I figured it was cancer. Hard to see, though, as I can't get my mouth open very far. Went to the ENT oncologist. He poked and prodded and hemmed and hawed and said "I don't know what caused this, but it isn't cancer. I'll biopsy it if you want, but I'd prefer to just look at it in a week." He is an expert. I came back in a week. No change. He said "no change, it isn't cancer, somehow you traumatized it. Let me see it in a month." Today, now three weeks into this, I notice it is visibly smaller. I don't know what caused it. Maybe I burned my tongue. It doesn't really work very well since half of it is paralyzed and the rest is fibrotic, and I do have trouble moving hot food around when it burns. But heck, its all good.

    Toluidine blue won't help. It is positive in areas that are hypermetabolic. This includes both trauma and cancer. So I wouldn't advise that, as it isn't defininitive. Notice my ENT oncologist said "I will bx this if you want me to..." Heck, when it comes to my own health care, I'm just an ordinary guy. Emotion gets in the way. So my immediate answer is "do what you'd do if you were me."

    BTW, three weeks of healing into a little burn spot. That's about how fast my tongue heals. It takes forever. When we have been radiated, it is amazing how much diffferent things are.


    Pat
  • Pam M
    Pam M Member Posts: 2,196
    #4
    Hmmm
    Hard to say - you don't want to offend AND you don't want to perhaps diagnose a potential problem much later than you could have. I think it's perfectly reasonable to tell your ENT that you are very concerned about the spot, and feel that perhaps you bit on the spot BECAUSE is was raised instead of causing the spot by biting the area.

    I got much lighter rads on one side, and my cheeks are visibly different thicknesses.

    Very glad you've got good lasting power when you're out with the boys - that's good for the whole family.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    Unless he's a total ****, I can't see why
    he'd be offended by your insistance that he check this spot out....even if he says "lets watch it for a month", and see if there are any changes....You have been through a LOT in the last year, all due to a cancer that is hard to find until it's in Stage III or IV...been thru the treatment, and been thru the long time it takes to heal.....you have EVERY right to be skiddish about anything happening in your mouth. I'd remind the ENT of why you are nervous about that spot....so he can relate to what he may perceive as paranoia....it's justified.

    p
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #6
    phrannie51 said:

    Unless he's a total ****, I can't see why
    he'd be offended by your insistance that he check this spot out....even if he says "lets watch it for a month", and see if there are any changes....You have been through a LOT in the last year, all due to a cancer that is hard to find until it's in Stage III or IV...been thru the treatment, and been thru the long time it takes to heal.....you have EVERY right to be skiddish about anything happening in your mouth. I'd remind the ENT of why you are nervous about that spot....so he can relate to what he may perceive as paranoia....it's justified.

    p

    Thank you all... :)
    I really appreciate all the feedback... Sometimes I worry I'm a bit needy.. LOL

    Best,

    Tim

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