Hey everyone, i‘m new to this community and very happy to found this group since synovial sarcoma is so rare there are not many of them. I was diagnosed with ss in 2017, small tumor size was little more than 1cm close to elbow. Doctors thought it was benign and did an unplanned excision, turned out it was ss. After that i of chemo and radiation. Scans have been clear since 3 weeks ago. They found a local recurrence at the same spot near elbow. Now they want to go for a bigger operation to get clear margins. I feel so incredibly devastating, it took me almost the whole 4 years to finally overcome this topic and to really start to believe that there could be future for me. Now it all starts again, i feel like there is no sense to put an affort in anything, i was planning to start a family the next two years, now i feel like i have no hope anymore that i could ever overcome this forever. Do you have any advice for dealing with this kind op issues? Of couse i would love to hear from some success stories no matter how they look like. Best wishes
Recurance at the same location is ok. Make sur you have a good surgeon and mention a nerve transplant and you should be alright. Chances are very bright . Usually tumor has to be 5 cm before it metastasised to the lungs. You should plan baby . God bless
Hi
I was diagnosed with SS in March 2014. 68mm in my upper arm. For at least 3 years previous to this I had felt a lump which got progressively more painful. I was fortunate that in London there is a specialist Sarcoma centre. They new exactly what they were looking at. Within 10 days I was having radio to shrink the tumour before the 3 hour operation to remove it. My surgeon was the renowned John Skinner who removed it with clear margins. I have regular check ups and scans of my chest and to date all is clear. I never think to myself I have beaten this. It can come back after 10 + years. I feel truly lucky that after 7 years I am still around to tell the tale but I am an example however fragile that might be that it does not kill everyone.
Take care
JP
Hi, It has been 34 years since SS, chemo and rad and I have not had a reoccurrence. I did have the bones in my leg deteriorate and break in a couple of spots but I think they have the radiation more under control then they did back then. I was a little bit of a guinea pig but that is ok. I am still here and still doing what I can. Yes my life changed but it has changed many times, some good, some bad. My motto is: NEVER GIVE UP - GIVE HOPE. NEVER GIVE IN - GIVE INSPIRATION. I hope I gave you hope. As far as inspiration; I walk with a crutch and have for over 20 years but I will still climb small mountain, walk trails, volunteer, canoe and crutch slap the hell out of somebody if they deserve it! lol I hope this gives you some inspiration to not give up.
After my Mom had surgery to remove a massive “undifferentiated” sarcoma, she had a recurrence and we got a second opinion from a surgeon at MSK (Dr. Yoo). He had studied in Boston under a researcher who practiced radiating the area after tumor removal - as part of the surgery - and it drastically reduced the incidence of recurrence because it kills stray cells around the tumor area. He said he was a black sheep at MSK for advocating for it, but it worked, so… Always get second opinions. It’s hard to find what’s out there, what people are working on and have tried. My Mom went to a sarcoma specialist at Columbia who had helped develop an extremely toxic chemo cocktail. Guess what he used to treat her? He heart wasn’t strong enough to tolerate it with the first tumor but with the second it was… she died within 6 days of that chemo treatment. It just shut her body down.
Doctors can be narrow minded, they can have vested interest in specific treatments, you just never know. The better informed you can be, the more power you have.
Hello my name is Marie. I had a 6 cm Synovial sarcoma in my head and Neck in October 1995. I was thirty three. It was a 4th grade Tumor. It was in my right parapharyngeal space in my neck. I was given a very grim diagnosis. There was not much information or trial and error with treatments. I had surgery and then very aggressive radiation because chemo was not an option back then. my Surgeon was Dr. Richard Hayden. He was the Top Surgeon in Philadelphia for Head and Neck Cancer. Please stay positive. Change your thinking. I know how hard it is. Your mind controls your body. try to eat healthy ,exercise and keep your mind and spirit away from negativity. I am a Christian so praying each morning set the tone for my day and gave me peace. You can beat this Cancer. I also had a positive margin. I was so scared looking at my six year old and nine year old thinking I might not be there for them. God had different plans for me.
Madita, a very warm welcome to our community. I’m sorry that it was your recurrence that brought you here, but I’m glad that you now have a group to share thoughts with.
This is not an easy time for you, and we hope that being here make things a little clearer, or maybe even a little easier for you. Please lean on us: that’s what we’re here for. Besides, who knows when you’ll be able to offer a kind or supportive word to someone else going through a difficult time. That’s the beauty of Ben’s Friends.
Pepsi made me stop and think:
My motto is: NEVER GIVE UP - GIVE HOPE. NEVER GIVE IN - GIVE INSPIRATION.
Hope is one of the most powerful drivers in life, and it’s what maks it possible to live in the face of adversity, fear and setbacks. Have you discussed how you are feeling with your doctor? Asked for a referral to a counselling service? That’s something else you could do. You have your life to live, Madita, and that could be another source of support. Whatever is happening in your elbow, you can’t allow it to stop you from living the life you have today.
@JohnP, something in your post piqued my interest: a nerve transplant? I’m intrigued: can you tell us a bit more?
Although your news isn’t great, Madita, you have already brought something wonderful to this community. We have several people who we haven’t seen here for a bit, who have reached out to give you support. How nice it is to see all of you again and hear your kind words and positive stories.
Chin up, Madita! Let us know how you are getting along. We’re thinking of you!
Seenie from ModSupport
Hello my name is Carlos and I was diagnosed with SS en muy neck, just in front of my cervical spine, this was 6 years ago. I received chemotherapy, surgery (which was very aggressive) and 33 radiotherapy sessions, now i´m free of disease but i think always that what really helped me back then was my very conviction mind that a i was gonna be victorious of that battle, and staying positive and focus of each part or the treatment, i also recurred to alternative medicine with megadoses of intravenous vitamin C,transfer factors, and good health behavior! We are here to support you, be strong and positive!
I was diagnosed with SS in 1987. I went through two surgeries, 6 weeks of radiation, then what turned into two years of chemo. It’s now 2021 and I’ve been cancer free for ~ 34 years. The road was hard but stay they course. The wider margins was my second surgery.
Hello to everyone, I am also new to the community. My story starts with a pain that started in the arch of bottom of foot. It went on for 5 years. The pain was just in one spot and was so sensitive a bed sheet could not even touch it. I had several MRI’s through the years and talked to different doctors. Nothing ever came up on the MRI. I was very active and in great physical shape. I got to the point where I could not walk well in a shoe because of the sensitive pain. I finally went to another foot doctor and she suggested an Ultrasound, which I had no idea how that would work because of the sensitivity in my foot. We managed to do it and she said she saw something and felt maybe it was a cyst. I had the surgery to remove it and was excited to finally move on and be able to walk normal again. When the biopsy came back it was only fatty tissue. Once my foot healed after surgery I felt the same pain. She suggested physical therapy to desensitize it. That totally didn’t work and was miserable! Again, I was back to square one and could not hardly walk on my foot. Within a few months of my surgery, a small lump started forming to the right of where the stich was. I went back to the doctor and said now you can see something! There is a problem. Anyway, I went to a different surgeon and was again excited that I was going to get this resolved. After the surgery a couple days before I was going to get the stitches out, my doctor called me and told me that I had a rare type of cancer. It was SS. I was in complete shock! This happened in April 2018. I had a below the knee amputation in June 2018. My world was turned upside down overnight. I continue to get scans of my chest. They told me that it will most likely travel to your chest if it does reoccur. It has been three years and I have had clear scans. I do feel positive that I am still here to be able to pass my story on. The outcome could have been way different. It was a triple rare for me. Rare that it was in the bottom of my foot, rare that I was 50 years old, and rare the type of cancer. I tell people my story because my only indication of a problem was a sensitive to the touch spot that hurt in the bottom of my arch for 5 years. I felt great physically. No other signs. I also am terrified that it will come back, but I do try and focus on the positive and tell people to continue to be proactive with your healthcare. Don’t ignore your gut feelings.