Spindle Cell Sarcoma Looking for similar cases

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dfrank
dfrank Member Posts: 5
edited March 2014 in Breast Cancer #1
4 years ago my wife Mary had a lumpectomy and it was diagnosed as Spindle Cell Sarcoma, very rare in the Breast. She just underwent a mastectomy as she had a re-occurrence in the same breast, in the same area with a tumor that grew to 3 cm in less then 6 months. Now just 10 weeks later they found a large mass at the base of the lung and two spots additional spots on the outside of the lung and they are also Spindle Cell Sarcoma. We are looking for Doctor's with experience in this area, Studies, Trials, etc to help us with this battle. She is now at the Cleveland Clinic were they have removed a portion of the tumor that had grown into the airway to give her lung capacity until we find a solution. Please forward this to anyone that might be able to help or give us some input on were or who to contact.
Don dfrank330@aol.com

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  • weazer
    weazer Member Posts: 440
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    Don I:m So Sorry ,
    Have You tried the American cancer society?
    I have not heard of this type, but maybe someone on this board can give you some good tips.
    I will pray for you and your wife, all my well wishes go too the BOTH of you.
    God Bless
  • dfrank
    dfrank Member Posts: 5
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    weazer said:

    Don I:m So Sorry ,
    Have You tried the American cancer society?
    I have not heard of this type, but maybe someone on this board can give you some good tips.
    I will pray for you and your wife, all my well wishes go too the BOTH of you.
    God Bless

    Thanks
    Thanks for your kind words and advice, we are just getting started looking for help
  • weazer
    weazer Member Posts: 440
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    dfrank said:

    Thanks
    Thanks for your kind words and advice, we are just getting started looking for help

    Your Welcome
    Don & Mary, You Have come to the right place.
    There are so many awesome people here with very BIG hearts and good advise, I only wish I knew about this site when I was going through my trip.
    Lots of Hugs and hope to hear from you when ever you feel the need to reach out for help or just to vent.
    God Bless...Karie
  • MOrtiz0810
    MOrtiz0810 Member Posts: 41
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    So Sorry
    Hi Don,

    I'm so sorry that your wife is now battling with this diagnosis. I work in NYC so when I was diagnosed, I did a lot of research on Memorial Sloan-Kettering Cancer Center (MSK), and one of my closest friends, who's had an 8 year battle with Breast Cancer, has received her treatments at this facility. I know there are top rated Doctors in all states, but MSK is one of the leading facilities for more complex cancers. You might want to do a little research on the website. I hope this information helps you and Mary.

    The link is www.mskcc.org

    Many Blessing to you and Mary,

    MOrtiz
  • Katz77
    Katz77 Member Posts: 598
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    Where to look
    I went to the selection for cancer types and found a post with someone who has spindle cell. It's in the "rare and other cancers". Hope this gives u another venue. Good luck and positive prayers to you and ur wife.
  • New Flower
    New Flower Member Posts: 4,294
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    Katz77 said:

    Where to look
    I went to the selection for cancer types and found a post with someone who has spindle cell. It's in the "rare and other cancers". Hope this gives u another venue. Good luck and positive prayers to you and ur wife.

    My heart goes out to you and your wife
    Cleveland clinic has a good reputation. Sloan and Mao clinic too. My friend had web consultation via Skype with Mao doctors, you might look in to this option as well.
    Sending positive thought to your wife's way. I hope u find cure and she will be on her way to cancer free status.
    Hugs