My family member was diagnosed with Synovial sarcoma in March 2017. Her tumour type was Bisaphic ssx 1.
Im interested in finding out tumour types of others diagnosed with synovial sarcoma.
Could anyone with SS let my know their type -
Monosaphic , Bisaphic or Differentiated?
Also was it ssx1 , ssx2 or ssx4?
Hi, i have Monosaphic
synovial sarcoma. I am not sure what ssx means. My type is WHO 2015 ICD-0, stage T2bNxM1, IV.
Hi Fotini, thanks for that! How you doing?
Below is a little info about the different types of SS.
My son 11 yrs diagnosed this March WITH SS on his neck. It’s grade 2, 3CM tumor size and biphasic . His surgery is over and doing now radiation therapy. His CT scan for chest is clear.
What’s your situation now? What treatments have your family member taken?
Thanks for your reply . So sad to see a young child with this disgusting cancer. But it’s great to hear that the tumour was so small at 3cm - everything I’ve read indicates that the size of a tumour is the most important factor in regard to prognosis and also a young age is positive!
My family member is doing very well and is due her next scans at end of June. Last year she had 4 rounds of MAID chemotherapy followed by 1 month of radiotherapy. This was done to reduce the tumour size (which was 6cm) which it moderately did. A 7 hour surgery followed which achieved clean margins. Finally a further 2 rounds of chaemo. She has chest scans every 4 months for 2 years and then 6 monthly - so far Oct 2017 and Feb 2018 (all clear). I also have looked for anything else i could do that may help to stop this from returning and have her taking high omega 3 whilst reducing omega 6 which i learnt about from a book written by a synovial sarcoma survivor.
Can i ask did surgeon achieve clean margins?
I am sorry to hear about your son. My daughter had radiation and surgery but unfortunately her chest scan was not clear. She has Mets. For now the Drs don’t want to do chemo and the modules are too small for surgery or radiation so we are trying to enjoy life while monitoring the situation. Looks like you caught the cancer in your son early so the prognosis should be very good for you. Just make sure you have the chest CT scans every 3 months for the next 5 years.
Praying for your daughter too. How old is she?
What stage /grade of tumor she had?
Hi, for my son, we decide that we don’t do chemo as there conflicting recommendations between doctors.
Don’t want him to undergo severe sideeffects of chemo. Praying that our decision is correct.