undifferentiated embryonal sarcoma of liver

LindaDawn
LindaDawn Member Posts: 27
in Sarcoma #1

In 2008 I was diagnosed with undifferentiated embryonal sarcoma of liver. This is a very rare diagnosis in an adult. I was 48 at he time. I underwent a liver resection, removing a 16cm sarcoma.  I then had intensive chemotherapy following the ewings protocol.  I am here five years later and so far cancer free.  I used to have a thread on this dicussion board but it has disappeared.  Several people posted that they too had this rare cancer.  I wanted to restart the thread to give hope to those who feel very alone upon getting this diagnosis.  

Please feel free to ask questions and post your stories.

Remember, rare is not equivalent with worse.

Comments

  • SarahJ86
    SarahJ86 Member Posts: 7
    #2
    Glad to see this back!

    I was wondering what had happened to the thread. I wonder if there's some way to recover it. It's a shame to lose so many stories. I was going to just copy and paste my initial post, but I can't find where those are archived either.

     

    I was diagnosed at 27 and had a liver resection that took 82% of my liver and 4 pounds of tumor. I initially declined chemotherapy, but at my three month scan a small new tumor was detected. So, I've had four rounds of the Ewing's Sarcoma protocol (doxorubicin, vincristine, cyclophosphamide, etoposide, and ifosfamide) and a second surgery to remove the new tumor. The second surgery produced large clear margins, unlike the first in which the surgeon simply ran out of liver and only had 1 mm clear.

     

    I'm about to start my (hopefully) second-to-last chemo cycle this week. So far I have no new visible lesions, so my doctors are pretty optimistic. *fingers crossed*

  • CSN_Kim
    CSN_Kim Member Posts: 55
    #3

    Hi LindaDawn and SarahJ86,

    I apologize you're not able to see the old thread.  We're continuing to do some site maintenance and that may affect some posts that are more than several years old.  This may explain not being able to view an old thread. I'll look into it and give you an update once I have more information.

    Thanks for you patience.

     

    CSN_Kim

    CSN Support Team

  • CSN_Rowan
    CSN_Rowan Member Posts: 87
    #4
    CSN_Kim said:

    Hi LindaDawn and SarahJ86,

    I apologize you're not able to see the old thread.  We're continuing to do some site maintenance and that may affect some posts that are more than several years old.  This may explain not being able to view an old thread. I'll look into it and give you an update once I have more information.

    Thanks for you patience.

     

    CSN_Kim

    CSN Support Team

    Update on missing threads

    An update regarding the missing threads:

    The pre-2011 threads have just been republished on the CSN developer's site, and they are testing some added performance measures that should help improve the page loading speed. If everything goes smoothly with the test, all of the posts should be republished to the boards on Thursday. 

    Thank you for your patience,

    CSN_Rowan

    CSN Support Team

  • LindaDawn
    LindaDawn Member Posts: 27
    #5
    SarahJ86 said:

    Glad to see this back!

    I was wondering what had happened to the thread. I wonder if there's some way to recover it. It's a shame to lose so many stories. I was going to just copy and paste my initial post, but I can't find where those are archived either.

     

    I was diagnosed at 27 and had a liver resection that took 82% of my liver and 4 pounds of tumor. I initially declined chemotherapy, but at my three month scan a small new tumor was detected. So, I've had four rounds of the Ewing's Sarcoma protocol (doxorubicin, vincristine, cyclophosphamide, etoposide, and ifosfamide) and a second surgery to remove the new tumor. The second surgery produced large clear margins, unlike the first in which the surgeon simply ran out of liver and only had 1 mm clear.

     

    I'm about to start my (hopefully) second-to-last chemo cycle this week. So far I have no new visible lesions, so my doctors are pretty optimistic. *fingers crossed*

    glad to be back

    Sarah,

    I have an almost identical story.  I too had two liver resections and the ewings protocol.  I am five years out and it continues to look good.  I am sending up prayers for your own excellent outcome.  

  • LindaDawn
    LindaDawn Member Posts: 27
    #6
    CSN_Rowan said:

    Update on missing threads

    An update regarding the missing threads:

    The pre-2011 threads have just been republished on the CSN developer's site, and they are testing some added performance measures that should help improve the page loading speed. If everything goes smoothly with the test, all of the posts should be republished to the boards on Thursday. 

    Thank you for your patience,

    CSN_Rowan

    CSN Support Team

    thank you

    I have found comfort keeping information about his very rare cancer in adults flowing.  Thank you for your help.

  • burrows616
    burrows616 Member Posts: 3
    #7
    Undifferentiated Embryonal Cell sarcoma

    I am saddened that so many of the posts are gone this thread helped me alot when I was diagnosed at 22. For anyone who knows I finished chemo a little over a year ago, but have been referred to a fertility specialist because my oncologist believes that i may no longer be able to have children, can anyone give me any thoughts or anything?

  • SarahJ86
    SarahJ86 Member Posts: 7
    #8
    burrows616 said:

    Undifferentiated Embryonal Cell sarcoma

    I am saddened that so many of the posts are gone this thread helped me alot when I was diagnosed at 22. For anyone who knows I finished chemo a little over a year ago, but have been referred to a fertility specialist because my oncologist believes that i may no longer be able to have children, can anyone give me any thoughts or anything?

    I'm sorry, I don't really

    I'm sorry, I don't really have any advice on fertility. I had a hysterectomy because of concerns that my fibroids might be hiding sarcoma and because of bleeding issues. I'm looking forward to adopting, which is certainly a good option if you aren't able to have your own children. I hope everything works out for you.

     

    I did have some good news, though, the old posts are back! You can find them here: http://csn.cancer.org/node/165495 

  • SarahJ86
    SarahJ86 Member Posts: 7
    #9
    I'm sad to see that no one

    I'm sad to see that no one has been on here in so long. I just wanted to post a quick update. I had scans last week and am now officially a year cancer free!

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