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Neurofibromatosis and breast cancer

tjohnson2310
tjohnson2310 CSN Member Posts: 168 Member
in Breast Cancer #1
I have neurofibromatosis (NF1),it is a genetic disorder that causes tumors to grow in the nervous system,people with NF1 have a five fold chance of developing breast cancer.I suspected I had NF1 because I had textbook signs and symptoms.Thankfully,my symptoms are mild. Luckily, at MD Anderson(MDACC) there is a specialist for NF1.My suspicions were confirmed. Unfortunately, NF1 tumors in rare cases can turn to cancer. So, when I go back to MDACC I have to have an MRI of the brain and spine.I am hoping all will be well because I put off seeing the specialist until all was done with breast cancer treatment. It isn't enough that I worry about the risk of BC returning now have to think about how NF1 will effect my body because I have multiple NF1 tumors through out my body.
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Comments

  • survivorbc09
    survivorbc09 CSN Member Posts: 4,374 Member
    #2
    I am sorry tjohnson. I will
    I am sorry tjohnson. I will be praying that your MRI will have good results.


    Hugs, Jan
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  • Gabe N Abby Mom
    Gabe N Abby Mom CSN Member Posts: 2,413
    #3
    Wow...NF1 does not sound
    Wow...NF1 does not sound like fun at all. I'll be thinking of you, let us know how the MRI turns out.

    Hugs,

    Linda
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  • Noel
    Noel CSN Member Posts: 3,095 Member
    #4
    Gabe N Abby Mom said:

    Wow...NF1 does not sound
    Wow...NF1 does not sound like fun at all. I'll be thinking of you, let us know how the MRI turns out.

    Hugs,

    Linda

    Praying for you! Let us
    Praying for you! Let us know when your MRI is, so, we can send the pink bus with all of us on board!
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  • gami43
    gami43 CSN Member Posts: 281
    #5
    Noel said:

    Praying for you! Let us
    Praying for you! Let us know when your MRI is, so, we can send the pink bus with all of us on board!

    TJ - wow, you have a lot
    TJ - wow, you have a lot going on. I hope your NF
    symtoms remain mild. Really happy you will be at
    MDA with a NF specialist. I want to be on the pink
    bus with you, so let us know when. You will be in my
    prayers TJ and I'm sending you lots of hugs.

    Luv, Teresa
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  • tjohnson2310
    tjohnson2310 CSN Member Posts: 168 Member
    #6
    Noel said:

    Praying for you! Let us
    Praying for you! Let us know when your MRI is, so, we can send the pink bus with all of us on board!

    November
    I go back to MDACC at the end of November.
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