Synovial Sarcoma survivors wanted! Would love to hear stories!

135

Comments

  • terryp6590
    terryp6590 Member Posts: 1
    #42
    Still Going
    My name is terry.
    I have had synnovial sarcoma for 4 years. I got it when I was 16 but was told it was something else. Fours years later a doctor in gainsville finale told me what I had. It was 14cm long and all they could do at the time was amputate my leg below the knee.

    I will be starting chemo april 12. I will be in the hospital for 6 days getting the chemo 5 of those days. At the time it looke like I have had the cancer to long in my body, because it has spread through my blood stream and is in my lungs. My doctors are worries it will turn into lukemea.

    But I am not writting this to be discouraging. I am 20 years old and have had a great life with no regrets. God has been good to me and I have no reason to complain. All I can say is stay strong never give up. You never know what can happen.


    So long and farwell.
  • obie1203
    obie1203 Member Posts: 8
    #43
    terryp6590 said:

    Still Going
    My name is terry.
    I have had synnovial sarcoma for 4 years. I got it when I was 16 but was told it was something else. Fours years later a doctor in gainsville finale told me what I had. It was 14cm long and all they could do at the time was amputate my leg below the knee.

    I will be starting chemo april 12. I will be in the hospital for 6 days getting the chemo 5 of those days. At the time it looke like I have had the cancer to long in my body, because it has spread through my blood stream and is in my lungs. My doctors are worries it will turn into lukemea.

    But I am not writting this to be discouraging. I am 20 years old and have had a great life with no regrets. God has been good to me and I have no reason to complain. All I can say is stay strong never give up. You never know what can happen.


    So long and farwell.

    Stay strong


    Keep the faith and stay strong. My thoughts and prayers are with you
  • little sister
    little sister Member Posts: 1
    #44
    My sister is a 37 year survivor
    My sister was the 3rd report case of Synovial Sarcoma when she was 11 years old. This was in 1974. My sister underwent radiation and chemotherapy and an amputation of her right hand just below the elbow.

    I know that it is scary to go through the diagnosis and discuss the treatment options. But know from the sister of a survivor, I thank god every day that they did everything they could to save my sister. The treatment was much more archaic then than it is now. They have found so many more advancements in the treatment of this disease. The impact on the body is less severe now than it was then. She has struggled with the side effects of her treatment for years. She was right handed so she had to learn to do everything she normally did with her left. The chemotherapy attacked her immune system which leaves her susceptible to every virus', shingles, and to heal. They told her that the chemo caused too much damage to her reproductive organs so she would likely never have children. She did have a few miscarrages, but she had two successful pregnancies and she has two healthy children who are now in their 20's.

    God bless each of you as you fight your fight and count down to your 5 year mark. Know that we are all pulling for you. Surround yourself with love and laughter.
  • pebs
    pebs Member Posts: 2
    #45
    Hi, I am a 37 year old
    Hi,

    I am a 37 year old female and I was diagnosed with synovial sarcoma of the left forearm 5 days before Xmas 2010. I had the tumour for 23 years and it had always stayed the same size, however the pain it caused if I even tapped it was unbearable and it used to give "electric shock" type pain. It had been diagnosed as many benign tumours such as neuroma, ganglion, glomas tumour and lypoma despite never having a biopsy done. I was told not to have it removed as it was so close to nerves that I would lose use of my arm/hand. I just took the doctors words for it.......

    3 years ago despite it still not growing it became more painful and I decided to take the risks involved with surgery. It was removed and the pathology report diagnosed as a benign schwannoma. 6 months post surgery it returned and continued to grow, this time the symptoms were "different" I had involuntary twitches in my arm and the tumour was more firm. I had what was thought to be a returning schwannoma removed in Dec 2010 and then as I said recieved the bad news that it was a grade 2 synovial sarcoma. I have since had further surgery to obtain a negative margin and have just completed 30 sessions of radiotherapy. I had a full body C.T scan which showed my organs were clear and 2 subsequent chest x rays have also been clear. I see my oncologist in June for my radiotherapy follow up and all I can do now is hope that is the end of it and it does not appear again.

    Best wishes to all who are goiing through the same as me.
  • juice_box
    juice_box Member Posts: 1
    #46
    Hi Scarlett,
    I am 25 years
    Hi Scarlett,
    I am 25 years old and was diagnosed with synovial sarcoma on my right femur, on December 21, 2010. My husband and I had just been married less than two months before and Christmas was three days away. They weren't sure what it was but just determined from the biopsy that it needed to be removed. Jan 5th 2011 I had the mass removed along with a 16 cm of my femur and a full knee replacement. It was two weeks after surgery that I found out I needed chemotherapy. But before I could start we had to do In Vitro Fertilization. Chemo finally started February 11th. I had doxorubicin and ifosfamide. I had 4 rounds the last was Easter weekend. I'm all done now and my hair is just starting to grow back. The problem now is getting my leg to function properly again. The chemo set back my healing and I'm having I hard time bending my leg past 90 degrees. I get frustrated sometimes. But I just look at how far I've come. I spent 5 months on crutches and now I can walk on my own. It's still going to take some time before I am completely normal but I know I'll get there. I'm just thankful that I'm still here. And thats what keeps me going. I can overlook my hair loss my scars and my limp because I know that I survived, and I want to make my life the best it can be now. I know its hard to find people to relate too and for me a lot of friends just disappeared while I was undergoing chemo. Whether it was because they were afraid of bothering me or just didn't know what to say, I have no clue. But my husband and I find we have to try harder now, let people know we are available and we can get together otherwise we get overlooked and aren't included in plans. Anyway, I guess thats all I have to say except for stay positive! And if you need some encouragement read The Secret by Rhonda Byrne. It helped me a lot. Thanks for sharing your story!
  • jillycb
    jillycb Member Posts: 1
    #47
    dfauci0108 said:

    Hi Scarlet
    I am new to all this. I am 37 years old and the mother of 2 beautiful children. I just recently found out that what I thought was a pulled muscle is actually a tumor. It was classiffied as high grade synovial cancer, stage 4 and has mestastis to my lungs. I am walking into this like Im in a fog. Today I am driving to Boston, Mass. to The Dana Farber Medical Center which specializes in sarcomas. Then next week I am going to Memorial Sloan Kettering Hospital in NYC. The doctors here have not given me much hope, but I refuse to give up. The anxiety is overwhelming and I find myself crying more than a little bit. So I am defenitely understanding what you are feeling. It's a rough road, but I believe where you get your treatment makes a big difference. I am not letting this cancer beat me. At the end of this I am going to be on top. I am trying to stay positive and thats very important. Keep that in mind. I know I am also new to this but you can write me to vent, or whatever you may need at anytime. My email is giannasmom101@aol.com.... Good luck and keep going no matter what!

    Synovial Sarcoma & metastases
    Hi to all fellow synovial sarcoma sufferers!

    I was diagnosed in January 2008 with a tumour in the medial thigh. It had been noticeable retrospectively since September 2007 - by way of semi numbness in lower leg - caused by pressure on femoral nerve. No-one knew anything about this cancer until I met my orthopaedic surgeon who said if I was lucky he would save my leg!

    Radiotherapy to reduce tumour. 5 hour operation to remove tumour & do a vascular resection as it was wrapped around the femoral nerve, artery & vein. I now have what I call my city bypass! Tumour was 90% dead from radiation & was removed with negative margins.

    The chemo question came up, and although it was onbly a 2.3% likely hood of reducing chance of metsatases, I did it, but had to wait 5 months as my wound had not healed in my leg. It was a Doxirubicin/Isofosfamide combo. I managed 4 cycles, each 4-5 days in hospital.

    3 month checks from then on. In February 2010, just when I was getting cocky, a single metastase showed in lower right lobe of lung. They checked the rest of me, it all showed clear, so we removed that lobe in March 2010.

    All looked OK again......

    Now - we have 2 metastases in lower left lobe of lung, and one that is in the pleural cavity beneath where the right lung now finishes! My oncologist seems to think there are probably many more just dying to grow and be seen! Thanks a lot.

    The one in the pleural cavity is now growing.........We will probably have a go at standard radiation for that one, but what to do with the others......

    I see there are options in some places for Brachytherapy for Lung Metastases, and that seems like a very sensible approach - focussed radiotherapy. Does anyone know where they do this?

    Chemotherapy (Doxirubicin) apparently has a 25% chance of reducing metastic tumours, and there is another drug, not readily avalable that has a 20% chance of metastic tumour size reduction. This is not a cure I understand, just a management tool.

    How to keep positive when you have no idea what's going to happen next?

    I eat Apricot Kernels that I crack myself, I take Percy's Powder, lots of vitamins, Barley Grass Powder with fruit juices and yoghurt, and I work hard to keep my mind off all those nasty statistics you find on the Internet.

    I live in New Zealand. If anyone can direct me with regard to Brachytherapy or any other potential solutions to lung metastases or what medical establishments can offer the best advice/research, then I am sure we could all benefit from the information.

    With such a rare cancer, we need to pool our information to maximise the options and solutions that might work for some of us.

    Remember the Placebo effect - the power of the mind CAN make a difference, which means you need to be positive, and divert yourself from the anxiety that affects us all pre-visit time....
  • doctortad
    doctortad Member Posts: 15
    #48
    amore12 said:

    Synovial Sarcoma Diagnosis 12 Years Ago
    Hi Everyone,

    I am so glad I came on this site and found others with a common diagnosis and understanding of the disease. It always seems like people around me just don't "get it." I understand that, but it still is frustrating.

    I was diagnosed with Synovial Sarcoma 12 years ago. I began to have frequent "muscle spasms" in my upper left arm. When it happened, I would just massage my arm for a bit and forget about it. Then a few months later, as I was rubbing my achy arm, I noticed a lump. I went to the doctors where they told me it was possibly a lymph node. I was given antibiotics and told to come back in one week if it did not go away. From there, I was referred to a surgeon who told me it was only a lipoma. I was 15 at the time and in high school. I was scheduled to have my tonsils removed in June (this was probably around March) so I would not miss any school, so my surgeon decided to wait and team up with my ENT doctor and do both surgeries at the same time. I knew something was wrong and kept calling the surgeon who kept reassuring me it was nothing and would come out in a few months.

    Anyways, June came, I had my surgeries, and a few days later the dreaded call came asking my parents and I to come to the doctor's office. That's when we heard synovial sarcoma for the first time ever. I was sent to another doctor and had another surgery. My margins were clear and all I suffered was some nerve damage. I ended up not having any radiation or chemo. This June/July was 12 years since my diagnosis and I have been good since.

    I do understand the anxiety and depression. I was put into therapy and put on anti-depressents after the whole ordeal. I also just started back up on meds a week ago. Time does help, but I can still remember that dreaded summer as if it were yesterday. It is also so hard since you don't encounter many people with this type of cancer. I feel lonely and like people just don't understand.

    I recently had an MRI in July 2009. It came back as showing no recurrence, but a small "focus of tissue." My primary care physician assures me it is nothing. He says it is either scar tissue, a lipoma, or a lymph node. As confident as he is and as much as I love my doctor, I went back a few days later, explaining my increasing anxiety. I explained how I was told the exact same thing 12 years ago and that it wasn't nothing. He is sending me for a second opinion, at The Cancer Institute where I used to go. Suddenly, all the feelings came swarming back, hitting me like a tidal wave. It is likely nothing, but I would like them to know that for sure. Does anyone think a biopsy might be an option? I would love to hear other people's opinions and stories!!! Thanks for reading mine.

    thank you
    Hello amore12,

    My wife of ten years was diagnosed with synovial sarcoma 2.5 years ago. It had been undiagnosed in her leg for 13 years. She kept all her old doctor visit reports and reading them makes me want to cry. Had it been discovered way back then it would have been grade 1 instead of grade 3. Up until 2 weeks ago I thought she had been given a 68% chance of making it this long, when she told me that her doctors said it was more like 25% chance. I've been devastated ever since. I am scared for her, scared for our sons and scared for me. Reading about good people like yourself who have beat the odds and have continued to go on give me some hope. I love mer so much and can't imaging life without her. Thanks to you, amore12, maybe I'll be able to imagine having more time with her. Our older boy gave me his perspective this morning. He said, "We don't have any control over it, so enjoy the time we have, hope it doesn't come back, and meet it head on if it does. We haven't told our younger son.

    My wife is away at a conference for a week and I am missing her like crazy. Take care of yourself.

    Tad
  • doctortad
    doctortad Member Posts: 15
    #49
    amore12 said:

    Synovial Sarcoma Diagnosis 12 Years Ago
    Hi Everyone,

    I am so glad I came on this site and found others with a common diagnosis and understanding of the disease. It always seems like people around me just don't "get it." I understand that, but it still is frustrating.

    I was diagnosed with Synovial Sarcoma 12 years ago. I began to have frequent "muscle spasms" in my upper left arm. When it happened, I would just massage my arm for a bit and forget about it. Then a few months later, as I was rubbing my achy arm, I noticed a lump. I went to the doctors where they told me it was possibly a lymph node. I was given antibiotics and told to come back in one week if it did not go away. From there, I was referred to a surgeon who told me it was only a lipoma. I was 15 at the time and in high school. I was scheduled to have my tonsils removed in June (this was probably around March) so I would not miss any school, so my surgeon decided to wait and team up with my ENT doctor and do both surgeries at the same time. I knew something was wrong and kept calling the surgeon who kept reassuring me it was nothing and would come out in a few months.

    Anyways, June came, I had my surgeries, and a few days later the dreaded call came asking my parents and I to come to the doctor's office. That's when we heard synovial sarcoma for the first time ever. I was sent to another doctor and had another surgery. My margins were clear and all I suffered was some nerve damage. I ended up not having any radiation or chemo. This June/July was 12 years since my diagnosis and I have been good since.

    I do understand the anxiety and depression. I was put into therapy and put on anti-depressents after the whole ordeal. I also just started back up on meds a week ago. Time does help, but I can still remember that dreaded summer as if it were yesterday. It is also so hard since you don't encounter many people with this type of cancer. I feel lonely and like people just don't understand.

    I recently had an MRI in July 2009. It came back as showing no recurrence, but a small "focus of tissue." My primary care physician assures me it is nothing. He says it is either scar tissue, a lipoma, or a lymph node. As confident as he is and as much as I love my doctor, I went back a few days later, explaining my increasing anxiety. I explained how I was told the exact same thing 12 years ago and that it wasn't nothing. He is sending me for a second opinion, at The Cancer Institute where I used to go. Suddenly, all the feelings came swarming back, hitting me like a tidal wave. It is likely nothing, but I would like them to know that for sure. Does anyone think a biopsy might be an option? I would love to hear other people's opinions and stories!!! Thanks for reading mine.

    thank you
    Hello amore12,

    My wife of ten years was diagnosed with synovial sarcoma 2.5 years ago. It had been undiagnosed in her leg for 13 years. She kept all her old doctor visit reports and reading them makes me want to cry. Had it been discovered way back then it would have been grade 1 instead of grade 3. Up until 2 weeks ago I thought she had been given a 68% chance of making it this long, when she told me that her doctors said it was more like 25% chance. I've been devastated ever since. I am scared for her, scared for our sons and scared for me. Reading about good people like yourself who have beat the odds and have continued to go on give me some hope. I love mer so much and can't imaging life without her. Thanks to you, amore12, maybe I'll be able to imagine having more time with her. Our older boy gave me his perspective this morning. He said, "We don't have any control over it, so enjoy the time we have, hope it doesn't come back, and meet it head on if it does. We haven't told our younger son.

    My wife is away at a conference for a week and I am missing her like crazy. Take care of yourself.

    T
  • doctortad
    doctortad Member Posts: 15
    #50
    amore12 said:

    Synovial Sarcoma Diagnosis 12 Years Ago
    Hi Everyone,

    I am so glad I came on this site and found others with a common diagnosis and understanding of the disease. It always seems like people around me just don't "get it." I understand that, but it still is frustrating.

    I was diagnosed with Synovial Sarcoma 12 years ago. I began to have frequent "muscle spasms" in my upper left arm. When it happened, I would just massage my arm for a bit and forget about it. Then a few months later, as I was rubbing my achy arm, I noticed a lump. I went to the doctors where they told me it was possibly a lymph node. I was given antibiotics and told to come back in one week if it did not go away. From there, I was referred to a surgeon who told me it was only a lipoma. I was 15 at the time and in high school. I was scheduled to have my tonsils removed in June (this was probably around March) so I would not miss any school, so my surgeon decided to wait and team up with my ENT doctor and do both surgeries at the same time. I knew something was wrong and kept calling the surgeon who kept reassuring me it was nothing and would come out in a few months.

    Anyways, June came, I had my surgeries, and a few days later the dreaded call came asking my parents and I to come to the doctor's office. That's when we heard synovial sarcoma for the first time ever. I was sent to another doctor and had another surgery. My margins were clear and all I suffered was some nerve damage. I ended up not having any radiation or chemo. This June/July was 12 years since my diagnosis and I have been good since.

    I do understand the anxiety and depression. I was put into therapy and put on anti-depressents after the whole ordeal. I also just started back up on meds a week ago. Time does help, but I can still remember that dreaded summer as if it were yesterday. It is also so hard since you don't encounter many people with this type of cancer. I feel lonely and like people just don't understand.

    I recently had an MRI in July 2009. It came back as showing no recurrence, but a small "focus of tissue." My primary care physician assures me it is nothing. He says it is either scar tissue, a lipoma, or a lymph node. As confident as he is and as much as I love my doctor, I went back a few days later, explaining my increasing anxiety. I explained how I was told the exact same thing 12 years ago and that it wasn't nothing. He is sending me for a second opinion, at The Cancer Institute where I used to go. Suddenly, all the feelings came swarming back, hitting me like a tidal wave. It is likely nothing, but I would like them to know that for sure. Does anyone think a biopsy might be an option? I would love to hear other people's opinions and stories!!! Thanks for reading mine.

    thank you
    Hello amore12,

    My wife of ten years was diagnosed with synovial sarcoma 2.5 years ago. It had been undiagnosed in her leg for 13 years. She kept all her old doctor visit reports and reading them makes me want to cry. Had it been discovered way back then it would have been grade 1 instead of grade 3. Up until 2 weeks ago I thought she had been given a 68% chance of making it this long, when she told me that her doctors said it was more like 25% chance. I've been devastated ever since. I am scared for her, scared for our sons and scared for me. Reading about good people like yourself who have beat the odds and have continued to go on give me some hope. I love mer so much and can't imaging life without her. Thanks to you, amore12, maybe I'll be able to imagine having more time with her. Our older boy gave me his perspective this morning. He said, "We don't have any control over it, so enjoy the time we have, hope it doesn't come back, and meet it head on if it does. We haven't told our younger son.

    My wife is away at a conference for a week and I am missing her like crazy. Take care of yourself.

    Tad
  • doctortad
    doctortad Member Posts: 15
    #51
    amore12 said:

    Synovial Sarcoma Diagnosis 12 Years Ago
    Hi Everyone,

    I am so glad I came on this site and found others with a common diagnosis and understanding of the disease. It always seems like people around me just don't "get it." I understand that, but it still is frustrating.

    I was diagnosed with Synovial Sarcoma 12 years ago. I began to have frequent "muscle spasms" in my upper left arm. When it happened, I would just massage my arm for a bit and forget about it. Then a few months later, as I was rubbing my achy arm, I noticed a lump. I went to the doctors where they told me it was possibly a lymph node. I was given antibiotics and told to come back in one week if it did not go away. From there, I was referred to a surgeon who told me it was only a lipoma. I was 15 at the time and in high school. I was scheduled to have my tonsils removed in June (this was probably around March) so I would not miss any school, so my surgeon decided to wait and team up with my ENT doctor and do both surgeries at the same time. I knew something was wrong and kept calling the surgeon who kept reassuring me it was nothing and would come out in a few months.

    Anyways, June came, I had my surgeries, and a few days later the dreaded call came asking my parents and I to come to the doctor's office. That's when we heard synovial sarcoma for the first time ever. I was sent to another doctor and had another surgery. My margins were clear and all I suffered was some nerve damage. I ended up not having any radiation or chemo. This June/July was 12 years since my diagnosis and I have been good since.

    I do understand the anxiety and depression. I was put into therapy and put on anti-depressents after the whole ordeal. I also just started back up on meds a week ago. Time does help, but I can still remember that dreaded summer as if it were yesterday. It is also so hard since you don't encounter many people with this type of cancer. I feel lonely and like people just don't understand.

    I recently had an MRI in July 2009. It came back as showing no recurrence, but a small "focus of tissue." My primary care physician assures me it is nothing. He says it is either scar tissue, a lipoma, or a lymph node. As confident as he is and as much as I love my doctor, I went back a few days later, explaining my increasing anxiety. I explained how I was told the exact same thing 12 years ago and that it wasn't nothing. He is sending me for a second opinion, at The Cancer Institute where I used to go. Suddenly, all the feelings came swarming back, hitting me like a tidal wave. It is likely nothing, but I would like them to know that for sure. Does anyone think a biopsy might be an option? I would love to hear other people's opinions and stories!!! Thanks for reading mine.

    thank you
    Hello amore12,

    My wife of ten years was diagnosed with synovial sarcoma 2.5 years ago. It had been undiagnosed in her leg for 13 years. She kept all her old doctor visit reports and reading them makes me want to cry. Had it been discovered way back then it would have been grade 1 instead of grade 3. Up until 2 weeks ago I thought she had been given a 68% chance of making it this long, when she told me that her doctors said it was more like 25% chance. I've been devastated ever since. I am scared for her, scared for our sons and scared for me. Reading about good people like yourself who have beat the odds and have continued to go on give me some hope. I love mer so much and can't imaging life without her. Thanks to you, amore12, maybe I'll be able to imagine having more time with her. Our older boy gave me his perspective this morning. He said, "We don't have any control over it, so enjoy the time we have, hope it doesn't come back, and meet it head on if it does. We haven't told our younger son.

    My wife is away at a conference for a week and I am missing her like crazy. Take care of yourself.

    T
  • doctortad
    doctortad Member Posts: 15
    #52
    amore12 said:

    Synovial Sarcoma Diagnosis 12 Years Ago
    Hi Everyone,

    I am so glad I came on this site and found others with a common diagnosis and understanding of the disease. It always seems like people around me just don't "get it." I understand that, but it still is frustrating.

    I was diagnosed with Synovial Sarcoma 12 years ago. I began to have frequent "muscle spasms" in my upper left arm. When it happened, I would just massage my arm for a bit and forget about it. Then a few months later, as I was rubbing my achy arm, I noticed a lump. I went to the doctors where they told me it was possibly a lymph node. I was given antibiotics and told to come back in one week if it did not go away. From there, I was referred to a surgeon who told me it was only a lipoma. I was 15 at the time and in high school. I was scheduled to have my tonsils removed in June (this was probably around March) so I would not miss any school, so my surgeon decided to wait and team up with my ENT doctor and do both surgeries at the same time. I knew something was wrong and kept calling the surgeon who kept reassuring me it was nothing and would come out in a few months.

    Anyways, June came, I had my surgeries, and a few days later the dreaded call came asking my parents and I to come to the doctor's office. That's when we heard synovial sarcoma for the first time ever. I was sent to another doctor and had another surgery. My margins were clear and all I suffered was some nerve damage. I ended up not having any radiation or chemo. This June/July was 12 years since my diagnosis and I have been good since.

    I do understand the anxiety and depression. I was put into therapy and put on anti-depressents after the whole ordeal. I also just started back up on meds a week ago. Time does help, but I can still remember that dreaded summer as if it were yesterday. It is also so hard since you don't encounter many people with this type of cancer. I feel lonely and like people just don't understand.

    I recently had an MRI in July 2009. It came back as showing no recurrence, but a small "focus of tissue." My primary care physician assures me it is nothing. He says it is either scar tissue, a lipoma, or a lymph node. As confident as he is and as much as I love my doctor, I went back a few days later, explaining my increasing anxiety. I explained how I was told the exact same thing 12 years ago and that it wasn't nothing. He is sending me for a second opinion, at The Cancer Institute where I used to go. Suddenly, all the feelings came swarming back, hitting me like a tidal wave. It is likely nothing, but I would like them to know that for sure. Does anyone think a biopsy might be an option? I would love to hear other people's opinions and stories!!! Thanks for reading mine.

    thank you
    Hello amore12,

    My wife of ten years was diagnosed with synovial sarcoma 2.5 years ago. It had been undiagnosed in her leg for 13 years. She kept all her old doctor visit reports and reading them makes me want to cry. Had it been discovered way back then it would have been grade 1 instead of grade 3. Up until 2 weeks ago I thought she had been given a 68% chance of making it this long, when she told me that her doctors said it was more like 25% chance. I've been devastated ever since. I am scared for her, scared for our sons and scared for me. Reading about good people like yourself who have beat the odds and have continued to go on give me some hope. I love mer so much and can't imaging life without her. Thanks to you, amore12, maybe I'll be able to imagine having more time with her. Our older boy gave me his perspective this morning. He said, "We don't have any control over it, so enjoy the time we have, hope it doesn't come back, and meet it head on if it does. We haven't told our younger son.

    My wife is away at a conference for a week and I am missing her like crazy. Take care of yourself.

    T
  • doctortad
    doctortad Member Posts: 15
    #53
    amore12 said:

    Synovial Sarcoma Diagnosis 12 Years Ago
    Hi Everyone,

    I am so glad I came on this site and found others with a common diagnosis and understanding of the disease. It always seems like people around me just don't "get it." I understand that, but it still is frustrating.

    I was diagnosed with Synovial Sarcoma 12 years ago. I began to have frequent "muscle spasms" in my upper left arm. When it happened, I would just massage my arm for a bit and forget about it. Then a few months later, as I was rubbing my achy arm, I noticed a lump. I went to the doctors where they told me it was possibly a lymph node. I was given antibiotics and told to come back in one week if it did not go away. From there, I was referred to a surgeon who told me it was only a lipoma. I was 15 at the time and in high school. I was scheduled to have my tonsils removed in June (this was probably around March) so I would not miss any school, so my surgeon decided to wait and team up with my ENT doctor and do both surgeries at the same time. I knew something was wrong and kept calling the surgeon who kept reassuring me it was nothing and would come out in a few months.

    Anyways, June came, I had my surgeries, and a few days later the dreaded call came asking my parents and I to come to the doctor's office. That's when we heard synovial sarcoma for the first time ever. I was sent to another doctor and had another surgery. My margins were clear and all I suffered was some nerve damage. I ended up not having any radiation or chemo. This June/July was 12 years since my diagnosis and I have been good since.

    I do understand the anxiety and depression. I was put into therapy and put on anti-depressents after the whole ordeal. I also just started back up on meds a week ago. Time does help, but I can still remember that dreaded summer as if it were yesterday. It is also so hard since you don't encounter many people with this type of cancer. I feel lonely and like people just don't understand.

    I recently had an MRI in July 2009. It came back as showing no recurrence, but a small "focus of tissue." My primary care physician assures me it is nothing. He says it is either scar tissue, a lipoma, or a lymph node. As confident as he is and as much as I love my doctor, I went back a few days later, explaining my increasing anxiety. I explained how I was told the exact same thing 12 years ago and that it wasn't nothing. He is sending me for a second opinion, at The Cancer Institute where I used to go. Suddenly, all the feelings came swarming back, hitting me like a tidal wave. It is likely nothing, but I would like them to know that for sure. Does anyone think a biopsy might be an option? I would love to hear other people's opinions and stories!!! Thanks for reading mine.

    thank you
    Hello amore12,

    My wife of ten years was diagnosed with synovial sarcoma 2.5 years ago. It had been undiagnosed in her leg for 13 years. She kept all her old doctor visit reports and reading them makes me want to cry. Had it been discovered way back then it would have been grade 1 instead of grade 3. Up until 2 weeks ago I thought she had been given a 68% chance of making it this long, when she told me that her doctors said it was more like 25% chance. I've been devastated ever since. I am scared for her, scared for our sons and scared for me. Reading about good people like yourself who have beat the odds and have continued to go on give me some hope. I love mer so much and can't imaging life without her. Thanks to you, amore12, maybe I'll be able to imagine having more time with her. Our older boy gave me his perspective this morning. He said, "We don't have any control over it, so enjoy the time we have, hope it doesn't come back, and meet it head on if it does. We haven't told our younger son.

    My wife is away at a conference for a week and I am missing her like crazy. Take care of yourself.

    T
  • doctortad
    doctortad Member Posts: 15
    #54
    doctortad said:

    thank you
    Hello amore12,

    My wife of ten years was diagnosed with synovial sarcoma 2.5 years ago. It had been undiagnosed in her leg for 13 years. She kept all her old doctor visit reports and reading them makes me want to cry. Had it been discovered way back then it would have been grade 1 instead of grade 3. Up until 2 weeks ago I thought she had been given a 68% chance of making it this long, when she told me that her doctors said it was more like 25% chance. I've been devastated ever since. I am scared for her, scared for our sons and scared for me. Reading about good people like yourself who have beat the odds and have continued to go on give me some hope. I love mer so much and can't imaging life without her. Thanks to you, amore12, maybe I'll be able to imagine having more time with her. Our older boy gave me his perspective this morning. He said, "We don't have any control over it, so enjoy the time we have, hope it doesn't come back, and meet it head on if it does. We haven't told our younger son.

    My wife is away at a conference for a week and I am missing her like crazy. Take care of yourself.

    Tad

    OOPS SORRY EVERYONE
    I don't know what I did wrong but I seem to have inundated this thread. That wasn't my intention and now I don't know how to get rid of the duplicates... will keep trying. Again, I am sorry. T.
  • doctortad
    doctortad Member Posts: 15
    #55
    doctortad said:

    thank you
    Hello amore12,

    My wife of ten years was diagnosed with synovial sarcoma 2.5 years ago. It had been undiagnosed in her leg for 13 years. She kept all her old doctor visit reports and reading them makes me want to cry. Had it been discovered way back then it would have been grade 1 instead of grade 3. Up until 2 weeks ago I thought she had been given a 68% chance of making it this long, when she told me that her doctors said it was more like 25% chance. I've been devastated ever since. I am scared for her, scared for our sons and scared for me. Reading about good people like yourself who have beat the odds and have continued to go on give me some hope. I love mer so much and can't imaging life without her. Thanks to you, amore12, maybe I'll be able to imagine having more time with her. Our older boy gave me his perspective this morning. He said, "We don't have any control over it, so enjoy the time we have, hope it doesn't come back, and meet it head on if it does. We haven't told our younger son.

    My wife is away at a conference for a week and I am missing her like crazy. Take care of yourself.

    Tad

    OOPS SORRY EVERYONE
    I don't know what I did wrong but I seem to have inundated this thread. That wasn't my intention and now I don't know how to get rid of the duplicates... will keep trying. Again, I am sorry. T.
  • Truusje
    Truusje Member Posts: 1
    #56
    Hi scarlett
    My name is
    Hi scarlett

    My name is Truusje, I'm from south africa. I also have a long story! Ill try to make its short! I'm actually celebrating my 5 year cancer free this year! When I was 21 I was diagnosed with a synovial sarcoma, I think in the worst place ever! My neck, inbetween my eosophogus and thrachea. At first the doc in my home town thought it was my thyriod, but they wanted me to see a specialist and after months of struggling to breath and eat properly I had my first ct scan and biopsy. Whitch came with devastating news! Worst of all was that I was all alone in that hospital bed when the doc broke the news! My mom and fiance went home already. The rest all happened so fast! Its like my life changes in seconds! The next day I had to get a tupe put in my thrachea, coz the doc was scared the tumour will grow so fast and sufficate me. I stayed in hospital for long, atleast it felt so! My doc wanted to figure out what will be the best route to take, coz the type of cancer I had was very rare. it was decided that I go for radiation and chemo first and we hope and pray that I wouldn't need surgery. Before I could go home I needed a feeding tube put in my tummy incase the radition would damage my throat so much that I can't eat. I must say that was so uncomfotrable! Living with that tube stiking out of my tummy for months! I had radiation for about 2 weeks when the tumor shrunk down so much that my doc decided I dint need chemo! Wow how amazing was that! So the tube in my trachea came out! Yippy! You don't know how nice that was! To beable to talk with out closing the whole in the trachea! No more need to take it out every day to clean, how painful that was! After 6 weeks of radiation and living away from home, I went for another ct scan. My tumor was still there! That was the worst feeling in the world! I really beleived it was gone! On 12 fed 2007 I went for surgery, almost everything in my neck was removed, they had to rebuid me a swollow pype out of my intestines and now I have a permanent trachea whole moulded in my neck from the skin on my chest. Worst of all my voice box was removed! So I have been silence for 4 years almost 5. My doc has tried voice valves with me but becoz my swollow pype isn't strong enough it jut doesn't work. It was a long and hard few years at a time I was in hospital every week to have my swollow pype stretched becoz I was unable to eat or drink. I made it throught! I have a lovely husband and family who understand me, not all the time but they learn. And last year we had our first child! How amazing is that! My boy means the world to me! I do get rough times! Its difficult to be silence in a world where everyone has a certain way of comumunicating. Where people are scared of me. Maybe becoz of the way I look or bcoz I'm just scared they won't understand me. Its difficult , but I thank God everyday for what I have!
  • Husband73
    Husband73 Member Posts: 1
    #57
    My wife was diagnosed in 94'
    Hi scarlett. My wife was diagnosed with a synovial sarcoma in her Rt elbow in law school in 1994 when she was 21. She was living in ottawa, ontario at the time and was sent to the Sarcoma group at the Mt Sinai hosital in Toronto. She had Rads before and after surgery where they were able to resect the tumor with minimal margins and reconstructt her elbow. She did not receive chemotherapy at the time. She finished law school, met me, got married and had 2 kids. She went to all of her f/u religiously and after 10 years they said that she was "cured". Then 15 years after her initial Dx. while she was pregnant with our 3rd daughter, she developed pain and weakness in her Rt hand at 8mo's gestation. Her ObGyne and family Dr said it was probably carpal tunnel. Then 1 week after delivery, she noticed that her forearm was swollen and tender and went back to her original surgeon who immediatly Dx a local recurrence 15 years later that was confirmed on Bx!. The tumor was big - 7 cm, too big for resection. In order to avoid an above elbow amputation of her dominant arm, they recommended Chemo to try and shrink the tumor to more manageable size. At the time the Drs could not say if the chemo would be helpful in preventing late metastatic disease. She went on 5 cycles of Ifos and Adriamycin which shrunk the tumor to about 1/2 its original size. Chemo was rough - 2 episodes of febrile neutropenia that required hospitalization. She went for a big surgery to remove the tumor and save her arm. Unfortunately the surgeons ran into insufficient blood supply to her hand post op, and 4 operations later she was left with an above elbow amputation. She has had vigilant surveilance with regular CT chests since her surgery and unfortunately the just found a 1cm metastases in her Left lung. the met is solitary and looks easily resectable, so she will be meeting the thoracic surgeon next week.

    My wife has been living with SS for nearly 18 years, she hasn't given up hope, and we haven't given up on life! We have 3 girls 10,8 and 3yrs. We try to make the most out of every day. it took a lot of counselling therapy for my wife and me as well as medications to deal with her original recurrence. I had to deal with some PTSD related symptoms from my wife's time in hospital and we have managed to stay happily married. I would strongly recommend counselling for both patients and loved ones having difficulty coping with anxiety and depression. Mindfulness relaxation really helped me - there is a book call "full catastrophe living" by John Kabat Zinn. The most important think to understand about the stress and anxiety is that it does not go away by merely wishing it to. It takes, counselling, therapy, physical exercise, a close network of family and friends to lean on, as well as antidepressant meds. Despite the bad news with the new lung met, my wife and I can still sleep ok most nights, enjoy time with family, friends and each other.

    The good news is that SS is one of the few types of sarcomas that are fairly chemosensitive to conventional chemotherapy. Most SS tumors do shrink with chemo. The bad news is that there is no good evidence that ifosfamide based chemo does anything to prevent late metastatic disease, and the cure rate (if there is such a thing) is far too low with current therapies in metastatic disease. So unless it is part of a clinical trial, routine chemo for resectable disease with negative margins is not indicated. It is unfortunate that 50% of soft tissue sarcoma patients are still given routine chemo for resectable disease when for the last 30 years there has been no good evidence to show that it prevents or delays late metastases. Maybe things will change with newer drugs and biological agents that offer a more targeted therapy. Being treated in a large tertiary center that has a multidisciplinary team treating sarcomas is very important for such a rare disease.

    There is life after cancer. My wife finished law school, met me, got married, had a successful career, finished a graduate degree in law, had 3 beautiful daughters. Losing her arm was horrible, but it didn't change our relationship or who she is as a person.
  • markesha03
    markesha03 Member Posts: 1
    #58
    13 Year old with Synovial Sarcoma
    Hello. My name is Jamie Fuller. I have a 13 year old daugher who had a synovial sarcoma behind her knee. She found it in May of 2011 during track practice. We got our Port in June of 2011,and started Chemo. She had 4 treatments of Ifosfamide and Adriamycin, and 25 radiation treatments. She did amazingly well. In November of 2011 we had the tumor removed, the tumor was essentially dead, with negative margins. The chemo made my daughter very very sick. Her therapies were monthly,for three inpatient days. It was really hard trying to decide if we were going to chemo after such a successful surgery, but I did decide to go ahead with the chemo despite how well the surgery was. My daughter's last 2 treatments were very hard on her, and her last treatment left her with an ANC of "0", and very low platelets. She has had Neulasta after each chemo treatment, but for some reason, her white blood cells are not responding as well as before. At any rate, Im glad to have run across this website. I will be sharing it with my daughter, and hopefully she will be open to sharing her experiences with all of you guys!! Blessing to everyone!! :)
  • Brucie
    Brucie Member Posts: 3
    #59
    Synovial Survivors
    Hi Scarlett

    I actually have just registered today with this site just as a result of reading your article. I have had a long experience with cancer. I have had cancer I suppose twice but I survived a synovial sarcoma many years ago. I have put my experience with cancer in my profile so if your interested in my experience you can read it.

    I hope you are still well and if you want to know more about my feelings and how I dealt with cancer I would only be too glad to share them with you.

    I must say the very fact your on this site and have stirred up the conversation is a brilliant way of helping to deal with the issues surrounding cancer.
  • Emeraldisle72
    Emeraldisle72 Member Posts: 1
    #60
    Brucie said:

    Synovial Survivors
    Hi Scarlett

    I actually have just registered today with this site just as a result of reading your article. I have had a long experience with cancer. I have had cancer I suppose twice but I survived a synovial sarcoma many years ago. I have put my experience with cancer in my profile so if your interested in my experience you can read it.

    I hope you are still well and if you want to know more about my feelings and how I dealt with cancer I would only be too glad to share them with you.

    I must say the very fact your on this site and have stirred up the conversation is a brilliant way of helping to deal with the issues surrounding cancer.

    Hello All....
    I have read jsut about all of your comments/posts. And just wanted to share my husband's journey as his case is different from the previous ones I read.

    Our journey started in December of 2010. I took him to the ER at our local hospital because he was sounding hoarse and had a lump on the left side of his neck. He was diagnosed with "pharangytis". We were told to let it runs it course over 7-10 days. When he wasn't any better, we went to a different ER which referred us to and ENT. Biopsies revealed what we all thought was Papilarry Thyroid Cancer. When he had his 1st of 2 surgeries to remove his thyroid & parathyroid gland in Feb. 2011, the surgeon found "cancer" in his esphogus. Biopsies of that area revealed Synovial Cell Sarcoma. He had to have a complete removal of his esophogus, voice box and they had to reconstruct his esophogus by using his stomach. Surgery margins were clean. He underwent 6 weeks of radiation therapy. In Aug. 2011 we found that the Synovial Cell Sarcoma had spread to areas in his abdomen. He underwent 8 rounds of intense aggressive chemo therapy that took its toll on him. Adryamycin/Ifex/Mesna cocktails every 21 days and 4 day hospital stays for 5 months. The tumors shrunk, but not comepletely. He is now considered in remission, but I am terrified still that it may return since this is such a rare form of cancer and the area of his body in which it "surfaced". We are optimiistic though.
  • pebs
    pebs Member Posts: 2
    #61
    Clinical trials
    I have obtained some details of clinical trials that are currently recruiting in Lyon, France.

    I am currently 15 months in remission but I researched alternative treatments in case of recurrence and came across the details.

    I thought I should post it as it may offer some hope to sufferers who have been diagnosed with terminal synovial sarcoma.

    Best Wishes.

    http://clinicaltrials.gov/ct2/show/NCT01469975?term=synovial+sarcoma&rank=11

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