recently diagnosed synovial sarcoma

amanda_rae
amanda_rae Member Posts: 1
edited March 2014 in Sarcoma #1
I was diagnosed a few weeks ago after having the tumor taken out of my left upper arm. Now they want to go back in and get more tissue to see if the cancer spread. Before they even find that out they want to start me on chemo. Has anyone else done this,is this normal? I just dont want to put my body through that unnessesarily. Please let me know how your doctors handled your case and if any of you had treatment at university of washington in Seattle. Thanks for any responses, Amanda

Comments

  • katie14
    katie14 Member Posts: 5
    #2
    Hi Im Katie and I had Synovial cell sarcoma it was in my wrist the took it out then they went back in and got more sample of tissue. Then they did Radiation than they started me on Chemo. And its good they did that because now im in remisson. E-mail me at kewl_girl72@hotmail.com
  • dkb1998
    dkb1998 Member Posts: 4
    #3
    Amanda, my name is Daniel and I was recently diagnosed with synovial sarcoma. Could you give me some of the specifics of your situation (tumor size, treatments, etc.) and let me know how you're doing? I'm trying to decide if I should have adjuvant chemotherapy after my surgery was successful and showed clear margins. You may reply at dkb42@email.byu.edu if you so desire. Thanks for any help.
  • DolbyMike
    DolbyMike Member Posts: 1
    #4
    Hi all.
    The docs are pretty sure that I've got a synovial sarcoma, but are doing a gene matching test to be sure. Oddly, it's in my neck, just under my left jaw. They tell me it's less than 1 in a million seeing this here. My wife and I are certainly anxious and would appreciate any info you can share with us.
    Thanks, Mike
  • twicebitten
    twicebitten Member Posts: 5
    #5
    I had synovial sarcoma in my right ankle Dx at age 12. I had my leg amputated below the knee, and had 10 months of chemo. That was in 1981! I am now 35, married, with 4 healthy, happy children. I was treated in Memorial Sloan Kettering in NYC. I am sure that if I were Dx now, amputation could be avoided. They have come along way with treatment/surgical options. I believe that chemo is very important though to prevent recurrence.
  • Rector1
    Rector1 Member Posts: 2
    #6
    3 years ago my husband had a sarcoma removed from his left arm, with clear peripherals. 3 years later it returned rapidly growing. He had his arm amputated. He did suprisingly well with this and I felt some of him was better than none of him. 6 months later it was in both lungs. He has had a thoracotomy in the left lung to removed nodules, and is now in chemo. 5 days on, 2 weeks off, and then back to the 5 days. This will continue for 5 sessions. Will it work? We pray. Do not delay with this cancer, it is fast growing, a very nasty sneaky one. God bless and good luck
  • Aflorencio
    Aflorencio Member Posts: 1
    #7
    Rector1 said:

    3 years ago my husband had a sarcoma removed from his left arm, with clear peripherals. 3 years later it returned rapidly growing. He had his arm amputated. He did suprisingly well with this and I felt some of him was better than none of him. 6 months later it was in both lungs. He has had a thoracotomy in the left lung to removed nodules, and is now in chemo. 5 days on, 2 weeks off, and then back to the 5 days. This will continue for 5 sessions. Will it work? We pray. Do not delay with this cancer, it is fast growing, a very nasty sneaky one. God bless and good luck

    I recently diagnosed with synovial sarcoma. The doctors said I had 2 options either amputate my leg or do a free flap sugery on my foot. I am only 23 years old and really didnt want to lose my leg to i decided to do the surgery. I am home now my foot is stil very swallen but the biospy of my foot is clear and iam very happy. I pray now that this is the last time. I always encourage people to never give up because this is the second time iam facing cancer.( the first time i was ten years old and had leukemia) if anyone needs someone to talk to I am here to help. I know its hard because i experience it twice and I will never give up!
  • Scobo
    Scobo Member Posts: 2
    #8
    DolbyMike said:

    Hi all.
    The docs are pretty sure that I've got a synovial sarcoma, but are doing a gene matching test to be sure. Oddly, it's in my neck, just under my left jaw. They tell me it's less than 1 in a million seeing this here. My wife and I are certainly anxious and would appreciate any info you can share with us.
    Thanks, Mike

    husband with synovial sarcoma
    Hi,

    My husband, Scott, is dealing with synovial sarcoma for the third time. The first time it was in his neck. 5 1/2 years later it spread to his lung and chest. Now it is in his chest again. I was wondering how you are doing and what treatments you have had. My husband has had radiation, chemo, and now chemo again. We are also looking into alternative things, and he is in a clinical trial.

    I am praying that you have not had a recurrence since your initial diagnosis.

    Bonita
  • Scobo
    Scobo Member Posts: 2
    #9
    Rector1 said:

    3 years ago my husband had a sarcoma removed from his left arm, with clear peripherals. 3 years later it returned rapidly growing. He had his arm amputated. He did suprisingly well with this and I felt some of him was better than none of him. 6 months later it was in both lungs. He has had a thoracotomy in the left lung to removed nodules, and is now in chemo. 5 days on, 2 weeks off, and then back to the 5 days. This will continue for 5 sessions. Will it work? We pray. Do not delay with this cancer, it is fast growing, a very nasty sneaky one. God bless and good luck

    your husband
    I am wondering how your husband is doing now. My husband is in his third battle with synovial sarcoma. He had two thoracotomies and is facing another possible surgery. Also had radiation, chemo, and other alternative stuff. Praying that our husbands kick this cancer!

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