Synovial Sarcoma

lizzy_curtis
lizzy_curtis Member Posts: 1
in Sarcoma #1
I was diagnosed in May with synovial sarcoma. I went bowling over spring break with my boyfriend and a few days later my leg had a bulge out the side. a few weeks later i found out that I had a tumor in my right upper leg that was right between my femoral artery and my femoral nerve so it was tucked in a very bad place. I started chemo the end of may and finished the beginning of July. After chemo I had surgery to remove the tumor and later started radiation. It has been a tough road with many bumps along the way. I was wondering if anyone else has had this type of cancer or has known someone that has suffered with this.

Comments

  • elodie
    elodie Member Posts: 4
    #2
    I was diagnosed with
    I was diagnosed with synovial sarcoma behind my left knee in 2003. At the time, I had an above-the-knee amputation and 6 cycles of chemotherapy (4 cycles of high dose ifosfamide and 2 cycles of doxorubicin + cisplatin). Lung mets were found end of 2007. More chemo, radiation and 5 lung surgeries later, I am without evidence of disease as of now. This disease can be tenacious...
    You may want to join the Synovial Sarcoma Survivor Network:
    http://www.synovialsarcomasurvivors.org/
  • richardCH
    richardCH Member Posts: 1
    #3
    Hey lizzy
    I was diagnosed

    Hey lizzy

    I was diagnosed with synovial sarcoma too.
    On my holiday in Australia, I had horrible pain in my belly and after some tests, they found out that I have this tumor (and I had the pain because it burst).

    I'm on my second round of chemo-therapy.
    How do you feel now after the chemo and the surgery? I hope you can go back to having a normal life?

    Cheers, Richard

  • ejenkins05
    ejenkins05 Member Posts: 2
    #4
    me too....

    Hey Lizzy!

    I too was diagnosed with synovial sarcoma, it was diagnosed in January 2011. It was attached to my diaphram, the bottom of my left lung, and my rib cage. I went through 6 rounds of ever increasing chemo to shrink the tumor and I ended up having surgery to remove the tumor and ended up losing my entire left lung, after that Ive been cancer free for almost a year.I had a bone scan and biopsy the week before Christmas and am waiting on results now,Ive got an appointment Tuesday afternoon,wish me luck!!

  • ejenkins05
    ejenkins05 Member Posts: 2
    #5
    me too....

    Hey Lizzy!

    I too was diagnosed with synovial sarcoma, it was diagnosed in January 2011. It was attached to my diaphram, the bottom of my left lung, and my rib cage. I went through 6 rounds of ever increasing chemo to shrink the tumor and I ended up having surgery to remove the tumor and ended up losing my entire left lung, after that Ive been cancer free for almost a year.I had a bone scan and biopsy the week before Christmas and am waiting on results now,Ive got an appointment Tuesday afternoon,wish me luck!!

  • ILOVETHON
    ILOVETHON Member Posts: 3
    #6
    Synovial Sarcoma 4 year survivor

    I was diagnosed with synovial sarcoma in 2008 when I was 13. It was a grapefriut sized tumor in my hip/groin, I had chemo, radiation, and surgery to remove the tumor and a partial hip and fumur replacement. I have relapsed 3 times in different places, twice in my lung, that was treated with surgery. I have had 3 three lung surgeries, the last one was an inferior lobectomy (removal of lower right lung). Then it came back behind my esophagus, right beside my heart. I was on a trial called Angio 1 at St. Jude, I had 3 different kinds of chemo and radiation. The chemo worked very well on my tumor which is good cause synovial sarcoma doesn't usually respond to chemo. The chemo I had when I was first diagnosed had almost no effect. So I just turned 18 years old and am 4 months and 10 days in remission! And its awesome! I hope you are doing well!

  • ILOVETHON
    ILOVETHON Member Posts: 3
    #7
    Synovial Sarcoma 4 year survivor

    I was diagnosed with synovial sarcoma in 2008 when I was 13. It was a grapefriut sized tumor in my hip/groin, I had chemo, radiation, and surgery to remove the tumor and a partial hip and fumur replacement. I have relapsed 3 times in different places, twice in my lung, that was treated with surgery. I have had 3 three lung surgeries, the last one was an inferior lobectomy (removal of lower right lung). Then it came back behind my esophagus, right beside my heart. I was on a trial called Angio 1 at St. Jude, I had 3 different kinds of chemo and radiation. The chemo worked very well on my tumor which is good cause synovial sarcoma doesn't usually respond to chemo. The chemo I had when I was first diagnosed had almost no effect. So I just turned 18 years old and am 4 months and 10 days in remission! And its awesome! I hope you are doing well!

  • broomhead
    broomhead Member Posts: 2
    #8
    ILOVETHON said:

    Synovial Sarcoma 4 year survivor

    I was diagnosed with synovial sarcoma in 2008 when I was 13. It was a grapefriut sized tumor in my hip/groin, I had chemo, radiation, and surgery to remove the tumor and a partial hip and fumur replacement. I have relapsed 3 times in different places, twice in my lung, that was treated with surgery. I have had 3 three lung surgeries, the last one was an inferior lobectomy (removal of lower right lung). Then it came back behind my esophagus, right beside my heart. I was on a trial called Angio 1 at St. Jude, I had 3 different kinds of chemo and radiation. The chemo worked very well on my tumor which is good cause synovial sarcoma doesn't usually respond to chemo. The chemo I had when I was first diagnosed had almost no effect. So I just turned 18 years old and am 4 months and 10 days in remission! And its awesome! I hope you are doing well!

    Thanks for posting

    Thank you for posting. My son is 11 and was diagnosed 5 months ago with synovial sarcoma in his lower back. He's had a large resection which included a skin graft. It's good to hear from someone else who was young when diagnosed so I can help my son. Any advice or insight is welcome!

  • loving mama
    loving mama Member Posts: 2
    #9
    broomhead said:

    Thanks for posting

    Thank you for posting. My son is 11 and was diagnosed 5 months ago with synovial sarcoma in his lower back. He's had a large resection which included a skin graft. It's good to hear from someone else who was young when diagnosed so I can help my son. Any advice or insight is welcome!

    i no its hard but u have to

    i no its hard but u have to hang in there been goin thought the battle with my son.Dont let him feel like he have to stop everything.praying help me get thought all of it.Its been almost two years alot of ups and downs.Keep him laughin and very busy.Never say he can do this or that

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