Malignant Peripheral Nerve Sheath Tumor

staceycron
staceycron Member Posts: 1
in Sarcoma #1

Hello.. My mother was just diagnosed with malignant peripheral nerve sheath tumor.  She noticed a lump on her lower abdomen and was was treated with a hernia repair.  A month later, another lump returned.  This lump was removed and came back as MPNST.  This diagnosis was given to us 5 days ago.  She had a CT of her abdomen, chest, and pelvis revieling a small unidentified spot on her lung.  We are currently waiting for a call from the specialist in Utah.

 

I am reaching out to anyone who has been diagnosed with this or has any family memeber who have been. We are in the early stages and I would like to know what we can expect.  

 

Thank you! 

Comments

  • debandjack
    debandjack Member Posts: 1
    #2
    Malignant Periferal Nerve Sheath Tumor

    My husband was diagnosed with MPNST in his deltoid muscle in Dec 2014. He has started chemo every other week for 16 weeks and then they plan on removing the tumor and moving muscle from his back to replace his deltoid. His biopsy was sent to Burlington Vermont and the Mayo Clinic. The first diagnosis was synovial sarcoma which was changed to a low grade MPNST, then upgraded to high grade. His tumor is 10 cm by 5 by 6. Our surgeon feels very confident that he will not have a reocurance. Is this realistic or should I be prepared for a lenghty fight ?

  • davehull
    davehull Member Posts: 8
    #3
    debandjack said:

    Malignant Periferal Nerve Sheath Tumor

    My husband was diagnosed with MPNST in his deltoid muscle in Dec 2014. He has started chemo every other week for 16 weeks and then they plan on removing the tumor and moving muscle from his back to replace his deltoid. His biopsy was sent to Burlington Vermont and the Mayo Clinic. The first diagnosis was synovial sarcoma which was changed to a low grade MPNST, then upgraded to high grade. His tumor is 10 cm by 5 by 6. Our surgeon feels very confident that he will not have a reocurance. Is this realistic or should I be prepared for a lenghty fight ?

    MPNST experience

    I'm not sure how to comment here.   I had a Stage 3b - high grade MPNST in my sciatic nerve >5 years ago and have been (post chemo, radiation and 2 surgeries) cancer free for over 4 years.  My tumor was 5 cm, but in a really tricky place to operate.  I was fortunate that there was no metastasis and that i responded well to the chemotherapy.  My tumor shrunk dramatically, and by the time I went in for my surgery to remove it, the radiation and chemo had essentially killed it.  I was told that without a full resection with clean margins - the tumor would return - but our surgeon (Memorial Sloan Kettering) was amazing, got it all - and I've been good ever since (we also followed surgery with 2 more rounds of chemo just to make sure we got every last cell. 

     

    Soooo - to answer your question - I think it's likely that if your surgeon feels like he can get the WHOLE tumor, with clean margins - and there is no evidence of metastasis - you could feel relatively encouraged that it will not recur.  Elminiating the tumor from the source/primary site was the key our doctors reinforced with me. 

     

    That said - 'lengthy fight' can be a relative term..  It was definitely a fight - I had some pretty intense chemo for 3 months, then 30 days of radiation, then the surgery, then 6 more weeks of chemo.  And the surgery ended up with the removal of my sciatic nerve - which resulted in permanent loss of function and sensation in much of my left leg.  So - after a lot of recovery, physical therapy, regaining my strength from chemo etc - I'm doing quite well - but it was absolutely a fight.  A fight well worth it as I'm now 38, have kids who are 7 and 9 - and aside from the loss of function in my leg - doing very well.  I've even regained more function than my doctors thought I would/could through a lot of hard work.  Deltoid may be a better place to have the surgery/recovery and may need less PT afterwards. 

     

    Good luck!   Sounds like you're in good hands - but I'd aways recommend a 2nd opinion with a Sarcoma center http://sarcomaalliance.org/sarcoma-centers/sarcoma-centers-list/ since they are a rare form of cancer and finding a doctor/group that has significant experience/expertise with this form of cancer is critical. 

     

    Please feel free to reach out to me if you'd like to connect any more about treatment, my experience etc - I'm happy to discuss any elements of my diagnosis, treatment or life as a cancer SURVIVOR! 

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