I've just been diagnosed with pelvic pecoma. Not able to start sirolimus for a little while due to other tests/scans/checks being done. I know this is super rare so I'm just keen to try and find people in a similar boat to share this journey :-)
Welcome to our community I hope you find it both informative and supportive.
I am Steve one of the community champions and my experience of cancer is via my wife who is living with Leiomyosarcoma.
I had never heard of pecoma before and when I did a search on the community I only found two other posts both from some years ago - so it does seem especially rare and as you note that can be not so helpful. Even with my wife's cancer we found little hard data but then we are over 10 years since she was diagnosed so things look ok at the moment.
There is some information on the sarcoma uk website that looks like it might be useful.
<<hugs>>
Steve
Always happy to help.
There is a tool on the main site "in your area" and if you enter your postcode (or possibly the hospital postcode) it will list the known support services in your area.
There is also a Maggies centre in Cheltenham
<<hugs>>
Steve
