Not synovial sarcoma?!

Went to Iowa City Hospital yesterday and met with the ortho oncologist concerning my 13 yo granddaughter’s elbow, and after conferring with the radiologist, they think it is not sarcoma, but rather synovial Chondromatosis, which is a much better diagnosis, I think…after reviewing articles today, it looks to be difficult to diagnose either disease. I am wondering what testing they will do on the tissue they remove? (the abnormal tissue is surrounding the elbow , both anterior and posterior aspects). Is there anything in particular her parents need to be asking the surgeon or pathologists to do? Are there
particular markers or stains that should be utilized, to make sure of the diagnosis. Or should we assume the appropriate testing will be done.?
Any thoughts on the subject will be appreciated. Thanks.

They can't tell from imaging but with a biopsy, they will definitely be able to tell a sarcoma from a chondromatosis.

There is a translocation specific to synovial sarcoma that can be checked with FISH (Flurorescence in situ hybridization). Most patients have the translocation but not all. When I was diagnosed in 2003, my tissue sample had to be sent to MSKCC to check for it. Other than that, immunohistochemical studies were done for EMA, AEl-AE3, CAM 5.2, Cytokeratin 7 and CD34 which turned out negative. My tumor cells were positive for vimentin and bcl-2. The cells were spindle cells. This is just my particular case. You can find more information about the different subtypes here:

http://atlasgeneticsoncology.org//Tumors/SynovSarcID5044.html

It's a good idea to ask for the pathology report after the biopsy. Depending on the results, you can decide whether you need a second opinion or not.

Thank you so much, Elodie; this is the sort of information I am looking for. From what I have read in the literature, it is even hard to diagnose the biopsy, and just want to make sure that everything is being checked. What does MSKCC stand for…Sloan Ketterling? (not sure of spelling)
I will have them definitely ask for the path report.

MSKCC: Memorial Sloan Kettering Cancer Center

Dr Ladanyi did the test:

http://www.mskcc.org/cancer-care/doctor/marc-ladanyi

From what I have heard, Sharon Weiss is the most experienced sarcoma pathologist but I also heard she retired. I am not sure though because Emory still has a page about her on its website:

http://pathology.emory.edu/AdminFacultyMember.cfm?Name_seq=423

Allie

I’m sorry to hear about your grand daughter.

My son was treated at Sloan as well as at University of Iowa. Let me know if I can help.

Brian

Thankyou for your concern. Surgery is scheduled the first week of March, and we are praying for the best possible outcome.