Synovial Sarcoma

riffraff
riffraff Member Posts: 1
edited March 2014 in Sarcoma #1
Hi there, My names steve I live in Australia and my brother has recently been diagnosed with Synovial Sarcoma in his left knee. I am trying to start an encouragement circle and was wondering if you would like to participate.
If you have survived cancer, particularly synovial sarcoma, please take a few minutes to document your story in an email and email it to:
wekillcancer@hotmail.com
Please include your fears and revelations, treatment pattern and outline your stage of life when this occured and where you are now... whats changed in your world?
I will colate these and post them on a web site so that people all over can read and be encouraged. I dont beleive cancer is a death sentence and I believe that a positive attitude and a mind set that you are in controll of your body are critical to successful treatment.
Above all else I would like to help you realise that there are thousands of survivours out there and the choice to become one is yours!

Thanks for reading my message, and hopefully we'll be in touch. I'll email the website details to those who reply and post it here when it is up.

Cheers!

Comments

  • djpatt
    djpatt Member Posts: 1
    #2
    Hey Steve in Australia. My name is Jewel and my 16 year old son Dan has been diagnosed with synovial sarcoma in his throat and it has spread to his lungs. This was just yesterday that we got the final diagnosis, and I don't have any wonderful stories yet, but I am looking forward to relating the victories we will be having with his treatment through the grace and mercy of God.
  • Kimmy155
    Kimmy155 Member Posts: 1
    #3
    Hi there! I have synovial sarcoma and I live in Tasmania Australia. I think ur idea is really good and hope that u do actually do it. It would be good to hear about from other people. I don't actually know a lot about synovial, because apparently they don't know a lot about it, so anything I could hear about from other people would be great! I am currently going through my first lot of radiation and it is on my sternum.
  • WendyAlfsen
    WendyAlfsen Member Posts: 1
    #4
    Kimmy155 said:

    Hi there! I have synovial sarcoma and I live in Tasmania Australia. I think ur idea is really good and hope that u do actually do it. It would be good to hear about from other people. I don't actually know a lot about synovial, because apparently they don't know a lot about it, so anything I could hear about from other people would be great! I am currently going through my first lot of radiation and it is on my sternum.

    I'm WEndy and my 29year old son was just diagnosed with synovial sarcoma ( right foot, ioriginally removed as a ganglion cyst but lab came back as sarcoma, metastasized to right leg lymph node. Not yet in margins surgery, radiation or chemo, but we'd like to know if any of you posting on this list are out there. Going to UCSF Cancer Center - what are latest treatments? Someone for my son to talk to who's been through this? Thanks, Wendy
  • climbermc
    climbermc Member Posts: 2
    #5
    I was diagnosed with synovial sarcoma in 1999.I have had chemo, surgery and radiation,the whole nine yards .I am in what they call surgical remissiom.The DR said I might lose my leg,well that did not happen instead I lost part of my fibula ,muscule and some of the surrounding nerves. If you want to know more or just some to talk to e-mail me momadukes_62@hotmail.com god bless/good luck
  • Speck
    Speck Member Posts: 4
    #6
    climbermc said:

    I was diagnosed with synovial sarcoma in 1999.I have had chemo, surgery and radiation,the whole nine yards .I am in what they call surgical remissiom.The DR said I might lose my leg,well that did not happen instead I lost part of my fibula ,muscule and some of the surrounding nerves. If you want to know more or just some to talk to e-mail me momadukes_62@hotmail.com god bless/good luck

    Hi i have a loved one that has been diagnosed with synovial sarcoma and she had her surgery. It was located on the spine and they got 95% of it out now i am wondering is this good? Please if you have had surgery how much did they get out any information would help me thank you.
  • Angela67
    Angela67 Member Posts: 2
    #7
    WendyAlfsen said:

    I'm WEndy and my 29year old son was just diagnosed with synovial sarcoma ( right foot, ioriginally removed as a ganglion cyst but lab came back as sarcoma, metastasized to right leg lymph node. Not yet in margins surgery, radiation or chemo, but we'd like to know if any of you posting on this list are out there. Going to UCSF Cancer Center - what are latest treatments? Someone for my son to talk to who's been through this? Thanks, Wendy

    Hey, I'm a 39 year old single mother of 5. I have a synovial sarcoma in my right foot. I didn't have a clue that I had cancer until the tumor was removed in Dec.2002. My cancer has come back in the same spot.I have had no treatment as of yet. I recently visited Moffitt Cancer center of Tampa Florida to discuss my options again. I have never felt more comfortable than I have with them.I am seriously considering having my foot amputated instead of going through all the drugs. This is a very tough decision,especially to say "Here take it."I meet with Moffitt again in one week to discuss the best plan. God be with you and all who have to go through any kind of Cancer!!
  • cmoney99
    cmoney99 Member Posts: 1
    #8
    Angela67 said:

    Hey, I'm a 39 year old single mother of 5. I have a synovial sarcoma in my right foot. I didn't have a clue that I had cancer until the tumor was removed in Dec.2002. My cancer has come back in the same spot.I have had no treatment as of yet. I recently visited Moffitt Cancer center of Tampa Florida to discuss my options again. I have never felt more comfortable than I have with them.I am seriously considering having my foot amputated instead of going through all the drugs. This is a very tough decision,especially to say "Here take it."I meet with Moffitt again in one week to discuss the best plan. God be with you and all who have to go through any kind of Cancer!!

    Hi there. I had a synovial sarcoma tumor in my left elbow and although it was removed, I lost my ulnar nerve and had a pretty large resection of my arm after they found out it was cancerous. However, I wouldn't give up my arm for anything - even if it isn't 100% yet. I was able to do radiation, and actually, because I'm in Tampa on a project, I'm going to Moffitt for my daily treatment. I would urge you to reconsider losing any part of your body, maybe it will be possible to deal with another surgery and radiation instead. I would ask about those options if you can. Best wishes to you as you travel down this path (albeit, again.)
  • novacmc
    novacmc Member Posts: 2
    #9
    cmoney99 said:

    Hi there. I had a synovial sarcoma tumor in my left elbow and although it was removed, I lost my ulnar nerve and had a pretty large resection of my arm after they found out it was cancerous. However, I wouldn't give up my arm for anything - even if it isn't 100% yet. I was able to do radiation, and actually, because I'm in Tampa on a project, I'm going to Moffitt for my daily treatment. I would urge you to reconsider losing any part of your body, maybe it will be possible to deal with another surgery and radiation instead. I would ask about those options if you can. Best wishes to you as you travel down this path (albeit, again.)

    synovial sarcoma
    We were told last week that the lump in my 15 yr old son's left elbow was synivial sarcoma. He just finished his first week of chemo.I was wondering about the recovery of your left arm.
    Hopefully you are still cancer free. The plan for now is 3 months chemo, surgery, more chemo.
    At some point they will throw in some radiation.
    Thanks

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