Hello. I am looking for advice and support.
six years ago I had a cancerous kidney tumour . My kidney was removed and I’ve been clear of cancer for 6 years. However a new tumour appeared in the renal bed where the kidney used to be. I had a biopsy - which has been doing the rounds of 3 different hospitals to finally get a diagnosis of cell type. Apparently it’s a PEComa.
I don’t know anything about sarcoma/ PEComa. Is there anyone here with a similar diagnosis? Can you recommend any other on line support group? I am currently waiting to see a new consultant as my last one only dealt with renal cell cancers. All the waiting is agony. Thanks.
Hi YorkshireSal
While I can definitely relate to the long path to a diagnosis I had never heard of a pecoma. Sarcoma treatment in general is concentrated in a few specialist centres as we can see on the sarcoma uk site.
Hope you find someone a bit close match - my wife's cancer is Leiomyosarcoma and that appears quite rare enough - especially fun when she sees any locum doctor and they look it up on wikipedia.
<<hugs>>
Steve
