Hello

Diagnosed with low-grade myxofibrosarcoma back in May. More than three years it took to get to a diagnosis, after a succession of GP visits, blood tests, two ultrasounds and an MRI to investigate an increasingly swollen and bruised lower right arm. A biopsy finally identified a tumour, now 32 cm long. I've been in a watching and waiting phase since then, to be reviewed next week. Myxofibrosarcoma (and from what I have read, soft tissue sarcomas generally) are rare so there is a frustrating lack of data to support reliable info. I know that surgery would be the first intervention, if watch and wait eventually leads to a conclusion that something needs to be done. In the meantime, I'm having to learn to live with uncertainty and the dark thoughts that intrude in the early hours of the morning. My partner does a lot of worrying on my behalf. I have it easy compared to so many of you who have shared stories on this forum. I just want to say hello and find out in particular how people handle a watch and wait approach. I know some people talk about a 'cancer journey'. So far, it turns out I was on a journey I didn't even know had started and it now seems to involve an awful lot of waiting around.