Synovial Sarcoma Treatments

Synovial Sarcoma - Online Patient Support Group

3 years in remission

Just thought I would add to the success stories to help with some positive encouragement and belief that for all the SS incumbents out there. I was diagnosed in March 2014 after experiencing pain in my right upper arm for some time. Within 10 days of the MRI scan and subsequent biopsyUploading… I was having 25 rounds of radiation to shrink and Uploading… firm up the 6cm Tumour prior to surgery. The tumour was removed in July 14 with clear margins. We are now approaching 2018 and I remain clear of this disease. I am now 57
and the anxiety before check ups never goes away.
I hate saying I’m clear because this disease never knows when it is beaten. I continue having regular scans on my chest until 10 years have lapsed.
What keeps me positive is when I read of SS survivors who are 15 years down this long and winding road. I was treated at a specialist Sarcoma centre in London. The surgeon was a specialist at safety removing SS . I have full use of my arm which was incredible when one considerers 6cm tumour with all the nerves etc in this area.
Good luck and prayers to everyone


John, thank you for taking the time to post this. We need news like this from time to time!

All the best to you

Seenie from Moderator Support

Great to read you’re doing good John!

Thank you , means a lot

Thanks for sharing this.

Hi John thats so fantastic to hear! We need all the positive news and inspiration we can get! You’re looking healthy and great!
My family member had a 6cm SS on her chest wall around top 2 ribs - diagnosed in March this year, finishd chaemo, radio & surgery a few months ago.
If you know could you let me know if your SS was bisaphic or Monosaphic? Also if ssx1 or ssx2?
Many thanks and continued good health!

Hi Dadoona
Thank you for the message my SS was Bisaphic. not sure about the SSX. I will find out and let you know. How is your family member? were they able to get clear margins?
take care

Thanks for your reply John!
My family member is gaining her strength back which is fantastic but obviously the anxiety is still there which i know is normal.
Had 1st lot of scans in November which were clear, next ones due in February. Yes thank goodness margins wer clear.
Hope you are keeping well? I suppose it’s freezing in UK right now? We are in Australia and have a forecast of 34 degrees for Christmas day which isnt too warm!
Best :slight_smile:

Quite jealous about Australia. My daughter is leaving for Bali on Friday. Not back until the new year.
I hope you enjoy the festive season and wish you health and happiness for the new year

Hi John
Just thought I’d touch base and ask how you are doing? All still well here but having next scans this coming week - as im sure you know it’s a very stressful time.
Can i just ask which London hospital did you have your treatment and surgery and who was the Doctor? Asking because should we encounter further problems we may consider seeking treatment in UK. Also was the tumour on the top of your arm??
Many thanks!

Apologies for not getting back sooner. Hope all is well. I had surgery in Stanmore hospital which is a specialist Sarcoma centre. My Sarcoma doctor was a lady called Dr Seddon. She is based at UCLH in London. This is also where I had my Radiotherapy look her up. My surgeon has retired. Its important that the surgeon is a specialist at removing Sarcomas. My sarcoma was in my right upper arm

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