I was first diagnosed with giant cell tumor on the tendon sheath of the right index finger/knuckle, but after MRI, I was diagnosed with Nodular necrotizing myxoinflammatory fibroblastic sarcoma. Soft tissue, excision was done and RNA sequencing at Cleveland Clinic revealed a YAP1::MAML2 fusion. I am told that chance of metastasis is low, but chance of recurrence is high. I will soon be starting radiation treatments to either get rid of it or to shrink it to the point that a clean amputation of the index finger can be done, which I am assured is the worst case outcome, aside from a greater chance of nodules spreading to my lungs, in the future. I understand that in terms of sarcoma and what I have read here on this subreddit, that I am very lucky and that things could be worse for me in terms of my diagnosis.
https://www.nature.com/articles/s41379-022-01096-6
I understand that my diagnosis is rare. From what I understand, MIFS is pretty rare to start with, but the YAP1::MAML2 gene fusion is even more rare. The study I linked has only 7 patients, and surely I'm not number 8. I'd think that there has to be more info on treatments and outcomes of what I was diagnosed with, but I can't find it. My options seem to be kill it with radiation, if that does not work, we'll cut it off. So far there has been no mention of any drugs or treatments besides this.
So my question is, does anybody else have this? Does anyone know anything about this from experience? Are the radiation treatments for this novel and we are improvising the treatment? Not that this is a bad thing, in fact its an honor to be part of it. My radiologist asked for permission to do extra documentation and the words "case study" were said, as well as "patient one of one", am I really this rare of a case? Can anyone help shine some light on my situation?