New to board

Bobcatpt Member Posts: 1
edited June 2018 in Head and Neck Cancer #1

So I am new to the board and group.  While I have not had an actual diagnosis of cancer of my tongue, I was diagnosed with high grade dysplasia.  I know my diagnosis could be worse, but I can’t get the worse case scenario out of my mind.   Anybody with experience with this and advice?   I’m am so scared that maybe I have cancer elsewhere and that it is showing now in my tongue.  I’m going in ina few weeks so they can get the margins to remove the rest of the dysplasia.  I’m afraid that this is something that will come back more aggressive eventually!     


  • Tonita
    Tonita Member Posts: 197 Member
    The best advice I can give

    The best advice I can give you is to try not to get ahead of yourself and go one step at a time.  I am two plus years out from have a tumor removed from my tongue.  I was a smoker so I knew when the lesion didn't heal that it was cancer and it was.  I had the same fears.  Did it spread?  Did I get to it in time? 

    I had the tumor removed along with 42 lymph nodes and so far so good.  I thinks once you have cancer, you always have cancer, in your mind anyway.  Just do what you have to do and take a lot of deep breaths.

  • katlou
    katlou Member Posts: 82 Member
    Keep a close eye on it

    I was diagnosed with stage 1 cancer which was on the underside of my tongue.  The cancer was very small at 1.5 mm so I was able to get by with a wide re-exicision to get large enough cancer free margins.  I didn't need any lymph nodes removed because the depth of the tumor was small at 0.6 mm.  My surgery was done about 4 months ago so I am in a wait and observe stage now.  I too worry that I could have or could develop cancer somewhere else or that I could have a re-occurrence.  My approach is to regularly see my ENT for checkups along with checking myself on a regular basis.  With me the good news was that it was caught early enough that I was able to be treated with surgery only.  The earlier it is caught, the better so keep a close eye on things.  Also, like Tonita I am a former smoker so that may be what caused my cancer.

  • wbcgaruss
    wbcgaruss Member Posts: 1,984 Member
    Sounds like you are on top of things

    Don't get ahead of yourself and deal with one thing at a time.

    Don't worry what might happen because it is unknown and after all it may not happen.

    Sounds like you and the docs are on top of this and are taking care of the sitiation at hand.

    So relax, be confidant and Blessings your way.

  • CivilMatt
    CivilMatt Member Posts: 4,698 Member
    not cancer


    You have not been officially diagnosed with cancer, but you have been diagnosed with high grade dysplasia which may become cancer, but it is not, and technically while you are being very cautious (and rightly so) you should not call something cancer, if it is not.  We are fast and loose with the rules on the forum, but the one which stands on its own is the cancer diagnoses.

    This may seem petty and I am sorry if I offend you, but who knows it may be cancer now!