Synovial Sarcoma - Online Support Group

Newly Diagnosed with positive attitude

Less than a month ago, our 31 year old daughter was diagnosed with Synovial Sarcoma in the ankle. Her treatment plan is chemo and radiation for 3 months as 2 nodules were also found on her lungs but too small to biopsy. My daughter has a great attitude and the fight in her as she has two small children counting on her which breaks my heart. My question is… my daughter had an MRI done 3 years ago why wasn’t it detected then ? Are all radiologists and physicians aware of this rare cancer ?

Sorry to hear this news of your daughter.
Sarcoma is a rare form of cancer that many people and might even doctors are still be to it.
Going to a sarcoma centre is prime important and get her treatments done. How big is her tumor?
My son was 11 yrs last year when he was diagnosed. He’s doing great now. God has done a miracle,
Keep us posted, my prayers for her and fly

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I’m sorry your daughter is dealing with this diagnosis. Sometimes sarcomas develop in places where an injury occurs (so maybe she had an mri for an injury in that same spot). Mine did. It’s nearly impossible that your daughter has had the synovial sarcoma for three years given how aggressive this sarcoma subtype generally is. I hope she is receiving great care at a high volume sarcoma center.

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I had the same issue with my 15y daughter. Dr told me it was nothing to worry about,MRI of ankle did not say anything and eventually I had the Dr take the nodule out of ankle but by then several spots were on lungs. The spots are still there and we scan her every few months. Looks to me that there are many incompetent Drs out there and lack of knowledge about this disease.

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Thank you. Tumor was 2 inches which was pressing on a nerve. At the time of removal dr didn’t know it was SS until the biopsy. She is being treated at Smilow Cancer center at Yale New Haven Ct. but if they need to amputate we will get a second opinion at Sloan. Glad to hear your son is doing well. I just wish my daughter’s cancer was caught earlier. Three years ago she had an MRI and drs didn’t see the tumor. Nevertheless we remain positive :pray:

Aside from the chemo, dr’s now want my daughter to have radiation each day for 6 weeks to her ankle. This is to prevent amputation. I heard radiation is very hard on the body and so now we are thinking we’ll go for a 2nd opinion with Sloan in NY.

My daughter had radiation only 5 times a week for 5 weeks to her ankle. I don’t think she ever complained of anything. I did notice that she was a little tired but that was about it.

Forgot to ask you. How big was the tumor? When they removed it, did it had margins? Or this is radiation before a second surgery. On my daughter case it was radiation before a second surgery.

The recovery was long after the second surgery because the wound opened up.

I did get second several opinion at MD Anderson.

Brooke- my son, 33 yrs old has been dealing with a SS in his Radial Nerve for a very long time. He hadn 2 Oops surgeries before they actually named it. Please Please get to Dana Farber or Sloan. He went to DF. They have an amazing Sarcoma team. When everyone else was talking a 4 quarter amputation of his right arm they focused on limb saving. He has 4 rounds of sex and ifos 21 days apart, surgery and 33 rounds of radiation. His first 3 month scans were done last weekend and Monday he was found NED. It’s a huge uphill battle and we have far from won but you need to be at a place that has Sarcoma experts and smilow isn’t. I’m in CT and available to talk. You can email me at anytime and we can connect.