Hello
I've recently been diagnosed with myxofibrosarcoma (MFS) in my arm. I've had a slowly-developing swelling and bruising on my arm for the last three years, baffling everyone I've consulted until a biopsy identified MFS. This has been a bit of a shock. So far, I'm in a 'waiting and monitoring' period before another scan to look at rate of growth which might lead to surgery.
I've been doing some homework on MFS and have learned so far that it's a cancer only recently identified. Although the MFS doesn't immediately impact my life (my arm works fine) I'm starting to realise that cancer involves a lot of waiting, dwelling and patience. There's also a fair amount of engaging with new medical language and encountering medical professionals with differing skill levels at explaining things and anticipating what I might need to know.
I'm keen to hear anyone else's experience with myxofibrosarcoma and the general process of engaging with doctors to learn about their cancer.
Cheers
Hi MichaelI
A warm welcome to our community though sorry to hear about what you are going through, my experience with sarcoma is through my wife and she had Leiomyosarcoma.
As I guess you have already found sarcoma is a rare form of cancer and as such most medics will have only one patient in their entire career. There is helpfully a charity sarcoma uk that provides some specialist information that can help here.
To try to create centers of experience there are a number of sarcoma specialist centres, we were rather lucky in that we live close to Oxford so saw specialists quite quickly.
My wifes cancer was metastatic when it was diagnosed and she had two different types of chemotherapy the second of which managed to render the cancer stable. As she says now the cancer is not bothering her and she is not bothering it - 10 years and counting
<<hugs>>
Steve
