Synovial Sarcoma survivors wanted! Would love to hear stories!

survivor
Well I am not 19 but I can so relate. I am now 37 and was diagnosed with synovial cell sarcoma when i was 28. I believe I had it since a bad fall off jungle gym in first grade. My right knee always had a terrible pain if it was hit or even touched at times. I finally decided to go to a different Dr. after getting hit with a softball and feeling like I was dying cause of the excrutiating pain.
The difference with my story is that I just had the radical resection- no chemo or radiation. I go to the University of Chicago- Dr. Peabody. My ten year celebration will be next September. Depression is really normal and I am a mother and was at the time of my cancer so the thought of leaving my kids was so painful. Don't read all the bad stories online. The survival rate is different for everyone- I truly believe this. Having a positive attitude and really questioning your Dr. is so important. Don't be ashamed of meds, I was on anti depressants for about 3 years. I just really had to give trust in God that whatever happens, happens. It truly has changed me as far being so much more emotional but that's ok:)
Hang in there, we are going to be the ones who change the survival rate!!!
Michelle

14 year survivor
I was diagnosed with synovial sarcoma in my left arm. I got surgery twice and radiation treatment. Chemotherpy was not an option. I was told it was experiemental and it was not garanteed to help so I stuck with the radiation treatment and prayer and i have been fine. You will never get over when things go wrong with you medically thinking does that have something to with. The aniexty will get better the further you go!

Synovial Sarcoma Survivor
Hi, My name is Lori and I am 46. I, too, had a sarcoma in the muscle of my left forearm. During the fall of 2007, I noticed some muscle weakness, and I was losing some of the fine motor function in my left hand. I started dropping things, and I began to feel a sore spot on my arm. Kind-of like when you run into something and have a bruise, but don't remember what you ran into. Around Christmas I began to notice a lump that hurt when I moved it around and pushed on it. It continued to grow and I finally mentioned it to my family. I saw the doctor in March and had an MRI done. The first surgeon I saw sent me to an orthopedic surgeon who referred me to an orthopedic oncologist. Talk about scary! Even though my kids are in their late teens, I still didn't want to leave them.
I had an open biopsy in April 08 and the diagnosis came in about a week later. I went through 25 radiation treatments, I had surgery to remove the tumor in July, all margins were clean. I firmly believe that I was cancer-free at that point.
However, just to be sure, I went through the in-patient chemo that you did, Scarlett, same chemo cocktails, just longer. Mine lasted 7 days each, six times. August through January. The worst part was that I was in a hospital about 60 miles away from friends and family and I was very, very lonely.

My scans in February and May were clean and my next one is scheduled for September.

As for the anxiety, I cannot tell you how I overcame it, just that it made my already existing anxiety much worse. I am taking 2 anti-depressants and 1 anxiety med. It's not necessarily the cancer or the thought of dying that makes me anxious, just the loss of control over my life. That's why I was on the meds before I was diagnosed, just to help me stay in control. I pray a lot, talk to anyone who will listen about my story, and just make sure I don't isolate myself. I've always been a positive person, even through my treatments, I don't know any other way to be. I believe I'm going to be OK. The meds just help keep those other thoughts from entering my head.

Thank you for your post. I had not encountered anyone with the same diagnosis as I had up to today. I'm glad we're not alone in our journey.
Lori

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.

Hi to everyone I am sat here
Hi to everyone I am sat here with tears streaming down my face it is so comforting to read your stories. I was diagnosed with synovial sarcoma in October 2008 so far I have met no-one else who has had this type. I suffered with discomfort and swelling in my leg for a year before my diagnosis as it is so rare I was diagnosed with arthritis then lymphodema before being given and MRI. i had 6 months radiotherapy before my operation this January. I have had one check up since and the surgeon thinks he removed it all. i have looked on the internet and scared myself silly reading the prognosis.
In some ways this disease has been a blessing it has given me and my family the opportunity to do things together now as I don't know how long I will be around for.
In other ways it has held me back, I graduate next month with a post-grad diploma in counselling but have not applied for any jobs as I don't know how well I am going to be or how long I have left. If time is short I want to do things that bring me pleasure like the hot air balloon ride my husband and I shared last time he was home on leave not spend precious time working.
I have developed a cough it is probably a cold but my fear is it has spread to my lungs, I tell myself I am stupid to worry and it is probably nothing but this is what I thought before I was diagnosed last year.
I wish you all well and thank you for taking the time to read this. x

Synovial Sarcoma
Scarlett and everyone else who has posted. My name is Barbara and I am nineteen years old. It was really comforting to see all the similarities I had with a lot of the people posting on here. November 2008 I noticed a bump on the side of my left thigh. I thought it was a knot from playing tennis and didn't think much of it. In the summer and next fall it began to get irritated so I would massage it and the more I massaged it the more irritated it got. I happened to tell my doctor about it during a yearly checkup and she had me get an ultrasound done. They couldn't figure out what it was so they sent me to a doctor to get a biopsy done. I am very afraid of shots, ivs and hospitals so I wasn't too thrilled about this biopsy. I never really thought anything of all of this because I truly thought it was just a knot or cyst. Four doctors could not determine my test results so they were sent to mayo clinic, Two weeks after my surgery I was told I had synovial sarcoma. Tomorrow I am meeting with a specialist. I don't know if I will need radiation or chemo. I don't know what stage it is or anything. Right now I just have so many questions that I know won't be answered til after surgery. I am so glad I stumbled upon this site and got to read all your stories. They are all very motivational. Like most of you no one can relate to what I am going through right now.

Survived and I'm 19 too!
Hi Scarlett,

My name is Mara and I am 19 also in California. When I was 15 I was diagnosed with Synovial Sarcoma after being told for four years that it was tendonidis(sp?) of my shoulder. Years later I noticed my shoulders were uneven and showed my dad. We of course went to the hospital and after tons of scans they told me what I had, and told me the only solution would be STRONG chemo and a four quarter amputation. (Amputation of the arm and shoulder) Of course he immediately started looking for a second opinion. We found UCSF in san francisco, which is only about 30 min away from us and they told me they would not take drastic measures of taking my arm away from me. Of course we immediately chose them because my surgeon there specialized in sarcomas. I went through intense chemo and radiation for a good year or so and had a major surgery removing the 12 centimeter tumor and some bone and muscle.

It is not 4 years later, and I have had no signs of re occurence and am a happy healthy college student. I've never even met another person my age with cancer let alone the same type since it's so rare. I hope my story helped

I was only 14, but now 17. Im a 3 year survivor!!!
I was only 14 and I had a tumor about the size of a half dollar on my right ankle. I had two surgery's in the same place. Then radiation. Things are much harder for me and its getting harder and harder to do things. Before this site, I thought I was the only one who felt this bad and the only one who's ever been through this. Im glad im not the only one, and i know ya'll understand more then anyone else.

23 Year Survivor
Dear Scarlett,

In August 1986 when I was 20 yrs old, I was diagnosed with synovial cell sarcoma in my foot. The bad news is that my foot was amputated - but the good news is that 23 yrs later I am here - healthy, married, two children (ages 15 & 13).

It is very tough to stay positive, but staying positive is your lifeline. Surround yourself with strong people.

Respond back if you'd like more info - I will be glad to give you my contact info.

Best, Jane

Jessg1011 said:

6 Months and Hopefully More
Hi,

So i am happy to see so many people doing good. It makes me feel hopeful. I am 24 years old and I live in Rhode Island.

In 2005 I Began to feel pain in my left forearm that would not go away. i thought it was carpyl tunnel. Was I wrong. So i went for an xray and they ended up xraying the wrong part of my arm. So they said they saw nothing. as the years went by i just learned to cope with the pain saying to myself well i aleady had it checked out and they saw nothing. Well in september of 2009 (yeah a long time after) I was washing dishes and my hand locked up and i dropped my dishes. I went to an urgent care the next day. I told the doctor my symptoms and issues he says that doesn't sound right let me take an xray just to make sure its not a tumor but it sound just like tendenitis. It turned out it was a tumor. They first thought it was a bone tumor I then got an mri and they thought it was a nerve sheath tumor. Then i was sent for a needle biopsy at rih. I waited a month for the results once they came back they told me it was a synovial sarcoma tumor.

I met with 4 different surgeons until an orthopedic surgeon at rih took my case. (thank god). I underwent surgery in November of 2009 and it was over a 4 hour surgery. My tumor was odd they said since most are ball shaped and you can feel them or see them through a visible eye. mine you could not see nore feel it went with the lenght of my arm. I now have a scar from my wrist to the middle of my bicep. I spend 9 days in the hospital receiving local radiation 3 times a day. They inserted tubes to put the radiation in my arm, it was in a form of a cast during my duration. Let me stress how painful it was!!!

All of the doctors and surgeons that were either in the room or that were student residents all told me how fascinated they were with my surgery since the tumor was wrapped in around my bones, nerves, veins, and tissue. Even oncology was shocked.

Since surgery I am still not able to work I have alot of median nerve damage. Its weird to me since the time has passed movement in my arm has gotten better i feel but i have lost feeling in my thumb, pointer and middle finger and down in my left hand. Oh and I am a lefty!

I have had mri's, ct's, and xrays periodically since while still meeting with oncology, chemo, and my surgeon. After meeting with the tumor board they feel right now chemo would not benefit me nor help me out. What has been tested is clean righ now I am releived.

I am still very fatigue and have even tried to change how I eat. This has been an extremely difficult situation for me to handle I have a 3 year old son and a husband. I now have alot of anxiety, and depression and my goodness fear of my next doctors appointment. I also always try to hide my arm now in fear of people seein such a huge scar.

Jessica

Keep Smiling
Hello Jessica,
My name is Robert and I live in San Antonio, TX.. I had my synovial cell tumor in my right arm above my elbow for 3 years also. I always thought it was just synovial fluid from an injury I received at work. Man was I ever wrong. I was first told that I had liposarcoma and that it "appeared" malignant. I then had an open biopsy (very painful) and was told that it was benign. This, after 4 pathologists couldnt agree on what it was. I then had the tumor removed. I have a 12" scar on my right arm from below the elbow to almost reaching my underarm. 10 days after surgery I went to have my stitches removed and was told it was malignant. A terrible roller coaster to be on. Like you, I am married (22 years) with 2 daughters 13 and 21. I'll also venture another guess, like you and all the others in this discussion forum, fear and anxiety seem to be constant companions.
After I was told the tumor was malignant I asked that the biopsy be sent out to another facility. This would now make it the 5th patholgist opinion. It was sent to Dr. Sharon Weiss at Emory University. She had the biopsy properly diagnosed as a Monophasic Synovial Sarcoma. She did testing on the tumor that I knew was very important to my prognosis.
My wife and I have researched synovial sarcomas on the internet and also on our Medical Schools database of journals and other publications. My wife is an RN and we have access via her job to lots of data. From what alot of the research shows, we who have synovial sarcomas are among a rare breed of cancer patients and survivors. Since my sarcoma is located at an extremity I have tried to research specific for all available statistics, prognosis, treatments, etc.. What I am finding is that those who have sarcomas in the furtherst parts of their extremities have a statistically "better" prognosis i.e. lower arm versus upper arm". If you had clear margins after surgery you are certainly in much better shape than if you had positive margins. Did you find out if you had the SSX1 or the SSX2 gene on the X chromosome? Things like this are important.
I noticed that you said you have also changed the way you eat. So have I. My encouragement to you and all of the other patients/survivors is to research, research, research! Dont be afraid to ask for second opinions. Seek out alternative treatments if you feel the need to. I am not advocating we disregard surgery, chemo, or radiation if they are needed and especially if they show promise of helping our situations. We need to stay as healthy as possible. Seek out a support group and a prayer group. Go see a nutitionist. Do what you have to do to stay healthy. We are among the 800 people in the USA who will be diagnosed and treated for this type of sarcoma this year.
And as far as the scars are concerned, Im allowing mine to be the epiphany in my life that will not allow me to forget to be thankful for everyday of life. Im sure your husband still thinks you're as beautiful as ever even with the scar. One thing I know for sure, our lives will never be the same.
God Bless You,
Robert

rponce1 said:

Keep Smiling
Hello Jessica,
My name is Robert and I live in San Antonio, TX.. I had my synovial cell tumor in my right arm above my elbow for 3 years also. I always thought it was just synovial fluid from an injury I received at work. Man was I ever wrong. I was first told that I had liposarcoma and that it "appeared" malignant. I then had an open biopsy (very painful) and was told that it was benign. This, after 4 pathologists couldnt agree on what it was. I then had the tumor removed. I have a 12" scar on my right arm from below the elbow to almost reaching my underarm. 10 days after surgery I went to have my stitches removed and was told it was malignant. A terrible roller coaster to be on. Like you, I am married (22 years) with 2 daughters 13 and 21. I'll also venture another guess, like you and all the others in this discussion forum, fear and anxiety seem to be constant companions.
After I was told the tumor was malignant I asked that the biopsy be sent out to another facility. This would now make it the 5th patholgist opinion. It was sent to Dr. Sharon Weiss at Emory University. She had the biopsy properly diagnosed as a Monophasic Synovial Sarcoma. She did testing on the tumor that I knew was very important to my prognosis.
My wife and I have researched synovial sarcomas on the internet and also on our Medical Schools database of journals and other publications. My wife is an RN and we have access via her job to lots of data. From what alot of the research shows, we who have synovial sarcomas are among a rare breed of cancer patients and survivors. Since my sarcoma is located at an extremity I have tried to research specific for all available statistics, prognosis, treatments, etc.. What I am finding is that those who have sarcomas in the furtherst parts of their extremities have a statistically "better" prognosis i.e. lower arm versus upper arm". If you had clear margins after surgery you are certainly in much better shape than if you had positive margins. Did you find out if you had the SSX1 or the SSX2 gene on the X chromosome? Things like this are important.
I noticed that you said you have also changed the way you eat. So have I. My encouragement to you and all of the other patients/survivors is to research, research, research! Dont be afraid to ask for second opinions. Seek out alternative treatments if you feel the need to. I am not advocating we disregard surgery, chemo, or radiation if they are needed and especially if they show promise of helping our situations. We need to stay as healthy as possible. Seek out a support group and a prayer group. Go see a nutitionist. Do what you have to do to stay healthy. We are among the 800 people in the USA who will be diagnosed and treated for this type of sarcoma this year.
And as far as the scars are concerned, Im allowing mine to be the epiphany in my life that will not allow me to forget to be thankful for everyday of life. Im sure your husband still thinks you're as beautiful as ever even with the scar. One thing I know for sure, our lives will never be the same.
God Bless You,
Robert

So sad to hear your story.
So sad to hear your story. just keep smiling.

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