u/AffectionateMany7653

I’m a 20 year old, diagnosed at 19 with an alveolar soft part sarcoma in the left thigh very rare, underwent radiotherapy and surgery fully removed, about five months later I got told it had spread to my lungs, the nodules have always been there since my diagnosed but they were not fully shown to be cancer until now, but they are so small they are waiting to operate until they grow so having regular scans. They are still seeing it as curable if I do open lung surgery on one lung and keyhole on the other, and then possibly some immunotherapy. They said if it spread anywhere else I’d be going on palliative care and looking at comfort/control options. I had a full body scan and they said there was no other spread, I was so relieved and so were those around me. I honestly thought I was going to die these past ten days waiting for results and I’d get the info it had spread everywhere and a prognosis. Obviously it’s positive but sometimes I feel like my doctors sometimes don’t tell the full truth because I’m so young and I know each situation is different and things can be unexpected but I’ve also seen people say you don’t survive lung mets and I’ve had people tell me they are surprised I haven’t been told I’m incurable even before it had spread because asps is so rare. Idk what I’m looking for really, advice? Good/bad stories? Thank you 🩷 sending love to you all