Hi everyone,
I’m new to all this but wondered if there’s anyone else who’s had this diagnosis? I’ve been told it’s a rare cancer and to get it in the vulva is even rarer. I feel a bit alone and like the doctors don’t really know what to advice.
Hi
Hope you do not mind a reply from a man around what might be seen as quite personal but did not want to leave you hanging with no reply. My wife had a fairly dramatic event with pyometra when her womb ruptured and I did spend the best part of a month in the women's centre when she recovered afterwards so there is rather little I have not heard in the way on issues that might affect women.
My wife's cancer is quite different - Leiomyosarcoma but all sarcoma's count as rare - not the greatest of help thought as basically the chance of finding someone as a match gets lower and lower and as for any useful statistics - not a hope.
I couple of useful other sites I found were Sarcoma uk and the rare cancer foundation.
We have been living with this cancer now for 6 years with two rounds of chemotherapy that have rendered the cancer stable. If Janice ever sees a locum GP and says she has Leiomyosarcoma first they ask her to spell it and then they look it up on wikipedia - always a great boost to our confidence. Most GP's of course will a most see one sarcoma in their entire carer - treasure your GP is they helped get you on the path to this diagnosis and fingers crossed the oncology team will get you to the next step soon - covid is making a bit of a mess of people even being sent for a diagnosis at the moment and there is a little bonus that care for people who are diagnosed is sometimes a bit more relaxed that at peak load.
<<hugs>>
Steve
