MPNST - Malignant Peripheral Nerve Sheath Tumor

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  • Josiejo
    Josiejo Member Posts: 1
    edited July 2019 #22
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    epauline said:

    Genetic Testing

    Hi all, I have recently completed treatment for a MPNST in my neck (surgery & radiatio). So far, scans are clean (Praise God!) and now my docs are encouraging me to be tested for NF1.  I am very hesitent to be genetically tested, as it doesn't affect my overall treatment, and there is no real cure for NF1 anyway.  I also worry about discrimination from insurers (there are no protections for long term care, disability, or life insurance).  Does anyone have any advice?  Are there real benefits to being genetically tested?  Thank you! Praying for you all!

     

    Advice

    Hi, I had surgery January 2019 to remove a lump on the side of my neck which was assumed to be in connection with the thyroid cancer I was also having removed. It later was diagnosed as MPNST  low grade. Due to the delay in diagnosis ( no one knew what it was) i was advised no radiotherapy as it would have been the most benefit within 3 months of the surgery, and that had passed. I'm 49. I'm having 3 monthly ultrasound scans, and waiting for an MRI scan.

    Do you have any advice please? As it's rare it's all a bit unknown. My surgeon is great but at the end of the day is a thyroid surgeon, I've seen a sarcoma team once but their advice was to have a second surgery and remove half My neck. I'm exhausted, stiff limbs and quite a lot of headaches   all of which i have no idea if they are connected to the sarcoma,  thyroid or completely unrelated ?

    Thank you,  hope you are well and still being monitored. 

    Joanne

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