Synovial sarcoma metastasized to lungs: Looking for connection

Hi @cootiekim -please feel free to message me. I am going through this with my son. We also just had scan recently and no visible signs of any cancer left in lungs (and it was VERY aggressive). Obviously it’s far too soon to know long term results- but here if you need anything.

I was diagnosed with a malignant solitary fibrous tumor in my liver on 10/21 and had it surgically removed with no other treatment. It was actually thought to be a carcinoma before surgery. On 10/23 it had metastasized to my lower right lung and I had a lung resection. On 6/24 it reappeared in my upper left lung also. Being a very rare cancer, no one knew what to do. Chemo was recommended but not my choice. Got a second opinion from Sloan Kettering on 8/24. Chemo recommended again and given 1 yr to live. Found Immunicare in Cancun and got treated for 6 weeks. feel great. Google Matt Halpern or Immunicine.com

Do you go to a facility that knows a lot about synovial sarcoma? I’ve gone to Mayo for synovial sarcoma for 38 years with more lung metastases than I can remember. Different options for removal I’ve had are surgery, radio frequency ablation, cryoblation, stereotactic radiation, brachytherapy, radiation and chemotherapy. You might ask about some of these other options.

Hi @cootiekim - my son has synovial sarcoma (started in kidney) and in lungs within a month (very aggressive). He’s done 6 cycles of AIM (doxy/ifos) which was brutal. There is a new immunotherapy out called Tecelra- only available at select cancer centers. He’s had it but too soon to know how it’s worked. Hey amazing docs. Not to put down Mayo, but MSK is amazing and are on cutting edge of synovial sarcoma research. Look up Dr. Sandra D’Angelo and her team.

That's great. Have you had any follow up scans to see if the cancer is still there. Glad that your feeling good

Thank you for your comment. I have asked about these procedures and it has given me more hope that I can live longer than they think

My husband is having surgery on July 17th at Staint Mary's. He started with soft tissue spindle cell sarcoma in his right hand on January 3rd of this year. Now it showed up in his left upper lung on the last CT scan.

My husband is having surgery on July 17th at Staint Mary's. He started with soft tissue spindle cell sarcoma in his right hand on January 3rd of this year. Now it showed up in his left upper lung on the last CT scan.