Synovial Sarcoma

rjb1437
rjb1437 Member Posts: 5
edited March 2014 in Sarcoma #1
Just turned 40 and diagnosed with a synovial sarcoma. Have gone through 4 cycles of chemo, radical resection of the tumor was done and am told went well. I start radiation for 5-6 weeks to take care of anything that may have been left. Still very confused I was told I had a 80-85% chance of a cure am told now that there is around 8% chance of it coming back to the same location 20% chance of it showing upin the lungs. I too am in shape, (phys.ed. teacher/coach) and did everything to avoid the big C, what a kick in the rear. When are you really cured?? I feel great and want to get on with life but remain cautious. I have a great wife and two super kids want to be around another 40 yrs anyway.. still looking for a guarentee!!

Comments

  • amybeth
    amybeth Member Posts: 1
    #2
    Hi my name is Amy. I am 17 years old and am a senior in high school. In Feburary I finished six months of treatment for synovial sarcoma. I don't know anyone with this kind of cancer. I'd love to hear from someone that has this kind of cancer in common with me!!!!
  • dave1999
    dave1999 Member Posts: 1
    #3
    amybeth said:

    Hi my name is Amy. I am 17 years old and am a senior in high school. In Feburary I finished six months of treatment for synovial sarcoma. I don't know anyone with this kind of cancer. I'd love to hear from someone that has this kind of cancer in common with me!!!!

    I am not sure when this message was posted so I hope someone reads this. In June of 2002 I will be a three year survivor of a synovial sarcoma. I have had no problems in those three years.
  • dkb1998
    dkb1998 Member Posts: 4
    #4
    dave1999 said:

    I am not sure when this message was posted so I hope someone reads this. In June of 2002 I will be a three year survivor of a synovial sarcoma. I have had no problems in those three years.

    Dave, 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.
  • dkb1998
    dkb1998 Member Posts: 4
    #5
    amybeth said:

    Hi my name is Amy. I am 17 years old and am a senior in high school. In Feburary I finished six months of treatment for synovial sarcoma. I don't know anyone with this kind of cancer. I'd love to hear from someone that has this kind of cancer in common with me!!!!

    Amy, 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.
  • novacmc
    novacmc Member Posts: 2
    #6
    amybeth said:

    Hi my name is Amy. I am 17 years old and am a senior in high school. In Feburary I finished six months of treatment for synovial sarcoma. I don't know anyone with this kind of cancer. I'd love to hear from someone that has this kind of cancer in common with me!!!!

    Are you still there ?
    My 15 yr old was just diagnoised w/synovial sarcoma.
    Wondering how you are doing?
  • elaine3
    elaine3 Member Posts: 1
    #7
    dave1999 said:

    I am not sure when this message was posted so I hope someone reads this. In June of 2002 I will be a three year survivor of a synovial sarcoma. I have had no problems in those three years.

    synovial saracoma
    Would love to hear from anyone who has survived synovial sarcoma.... I was dx Oct. 2007.
  • Ninasam
    Ninasam Member Posts: 2
    #8
    elaine3 said:

    synovial saracoma
    Would love to hear from anyone who has survived synovial sarcoma.... I was dx Oct. 2007.

    synovial sarcoma of lung with brain mets
    Hi there, I was diagnosed about 2 years ago with synovial sarcoma, primary in lung with brain mets. I am 38, have 2 kids and wonderful husband. I am told that its quite rare type of cancer, these days cancer in one form or another seem very common to me does it really matter what it is or where it came from, it all sucks. I try to live each day as it comes and have modified our lifestyle to accomodate as much life as possible. Earlier in my diagnosis i was asked my a less than compassionate ex husband, how long I had? I wish at the time my brain was functioning better I would have asked him the same question back, how long do any of us have? the real question is what do we do with the time we are given? I try to appreciate each day and teach my kids to be compassionate and responsible and to enjoy life. Sometimes thats a hard thing to do. Thanks for reading and would love to chat anytime.
  • obie1203
    obie1203 Member Posts: 8
    #9
    Ninasam said:

    synovial sarcoma of lung with brain mets
    Hi there, I was diagnosed about 2 years ago with synovial sarcoma, primary in lung with brain mets. I am 38, have 2 kids and wonderful husband. I am told that its quite rare type of cancer, these days cancer in one form or another seem very common to me does it really matter what it is or where it came from, it all sucks. I try to live each day as it comes and have modified our lifestyle to accomodate as much life as possible. Earlier in my diagnosis i was asked my a less than compassionate ex husband, how long I had? I wish at the time my brain was functioning better I would have asked him the same question back, how long do any of us have? the real question is what do we do with the time we are given? I try to appreciate each day and teach my kids to be compassionate and responsible and to enjoy life. Sometimes thats a hard thing to do. Thanks for reading and would love to chat anytime.

    17 year old son


    Hi, my 17 year old son has been diagnosed with primary synovial sarcoma of r. lung. not much info out there as i am told it is very rare. we are all shattered in every way. Ninasam, I saw your post, it seems that you have primary also. If you read this can you please let me know some of your details as i have no one else who has primary lung. thanks much and i hope you are doing well.
  • DESIREEmuriithi
    DESIREEmuriithi Member Posts: 1
    #10
    dkb1998 said:

    Dave, 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.

    ARE U STILL ON HERE? MY SON
    ARE U STILL ON HERE? MY SON WAS DIAGNOSED WITH SYNOVIAL SARCOMA, IM GOING THROUGH THIS TOO. PLEASE TELL ME HOW YOUR DOING
  • duygucuncu
    duygucuncu Member Posts: 2
    #11
    synovial sarcoma brain metastases from lung

    Is there anyone has this disease now?

  • duygucuncu
    duygucuncu Member Posts: 2
    #12
    Ninasam said:

    synovial sarcoma of lung with brain mets
    Hi there, I was diagnosed about 2 years ago with synovial sarcoma, primary in lung with brain mets. I am 38, have 2 kids and wonderful husband. I am told that its quite rare type of cancer, these days cancer in one form or another seem very common to me does it really matter what it is or where it came from, it all sucks. I try to live each day as it comes and have modified our lifestyle to accomodate as much life as possible. Earlier in my diagnosis i was asked my a less than compassionate ex husband, how long I had? I wish at the time my brain was functioning better I would have asked him the same question back, how long do any of us have? the real question is what do we do with the time we are given? I try to appreciate each day and teach my kids to be compassionate and responsible and to enjoy life. Sometimes thats a hard thing to do. Thanks for reading and would love to chat anytime.

    Hello 
     
    My mom has synovial

    Hello 

     

    My mom has synovial sarcoma of lung with brain mets. How you survive, please help us with your experiences. As much as I know this is very rare between all kind of cancers.

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