Olfactory neuroblastoma - a new member - my first post

Goyca
Goyca Member Posts: 220
in Head and Neck Cancer #1

 

3 weeks ago I had an endoscopic surgery to remove a tumor that spread in my left sinus area, around my eye and in my left nose. The doctors say surgery went well, they took out all the tumor, but the biopsy test came and it was an Olfactory Neuroblastoma.  The doctor said it’s a very rare tumor, mine is at low grade. After further studying my case, they decided that I need localized radiotherapy. My parents are trying to get different medical opinion that is from different hospitals and from USA too.

 

Tomorrow I have an appointment with the radiotherapist so we can discuss more about the treatment and my case.

 

I wish anyone here can give me advice, or is familiar with Olfactory Neuroblastoma, because on the internet there is such limited information. To be honest, I am scared of the treatment more than the tumor itself !!

 

 

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Morning Goyca

    As you  indicate, this is not a common tumor and posters with this disease come by the board only from time to time.  This is one of those situations where you certainly need to be confident that your treatment team is at least up to date on management protocal, because you likely won't find a center that has treated hundreds of these.  The pathology of this tumor are relatively difficult, so your first step is to make certain that the "read" on your tumor is correct.  Unless they can convince you there is no need, I personally would request outside consultation on the micro slides.    If you were in the US, referral to a academic center, like MDA would be a very reasonable next step.    What exactly is your situation wherever you live?  Welcome to the board, wish I had better information for you.

     

    Pat

  • Goyca
    Goyca Member Posts: 220
    #3
    longtermsurvivor said:

    Morning Goyca

    As you  indicate, this is not a common tumor and posters with this disease come by the board only from time to time.  This is one of those situations where you certainly need to be confident that your treatment team is at least up to date on management protocal, because you likely won't find a center that has treated hundreds of these.  The pathology of this tumor are relatively difficult, so your first step is to make certain that the "read" on your tumor is correct.  Unless they can convince you there is no need, I personally would request outside consultation on the micro slides.    If you were in the US, referral to a academic center, like MDA would be a very reasonable next step.    What exactly is your situation wherever you live?  Welcome to the board, wish I had better information for you.

     

    Pat

    thank u pat

    Thank you pat. What u said is true. I live in Lebanon and i had my surgery done in one of the best hospitals here. After my deep research I learned that only 1000 cases of olfactory Neuroblastoma is registered in the past 20 years. I researched about MD Anderson a while ago and I will try to contact them in order to send the biopsy for retesting it. I hope that since I'm still in my early 20s my body will be stronger than this tumor.

     

    I really appreciated your reply :)

     

     

     

     

     

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    Goyca said:

    thank u pat

    Thank you pat. What u said is true. I live in Lebanon and i had my surgery done in one of the best hospitals here. After my deep research I learned that only 1000 cases of olfactory Neuroblastoma is registered in the past 20 years. I researched about MD Anderson a while ago and I will try to contact them in order to send the biopsy for retesting it. I hope that since I'm still in my early 20s my body will be stronger than this tumor.

     

    I really appreciated your reply :)

     

     

     

     

     

    that seems reasonable

    Under any circumstances.  As it stands, it sounds like you had a well-differentiated cancer, but pretty extensive involvement.  And I understand your concern about radiation.  It is my understanding that the amount off rads generally proposed to extend the treatment fields for you would be about 60Gy.  Although that's quite a bit, it falls way short of the 68-72Gy that most of us get with SCC.  That would help a lot with long term side effects, but you are correct to be asking the questions.

     

    Pat

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    goyca, i just want to say,

    goyca, i just want to say, welcome to our family, and i'm very, very sorry you need to be here.  i'm not familiar with your cancer but wanted to say i am praying for you to get the best possible care and tx plan for your tumor.  i'm sure your young age will be beneficial in this fight.  it saddens me whenever this disease strikes anyone but especially young people like you.  this is a good place to be for suggestions, information, venting, questions and answers, encouragement and whatever else you need.  we will be on the sidelines cheering you on as you go thru tx.  i hope you will visit often to let us know how you are doing.  and in the meantime, we will be praying for all to go well.

    God bless you,

    dj

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