I found a lump below my knee 2 weeks ago, had the ultrasound last Friday and was referred with suspected sarcoma within 2 hours. I have a 5cm mass with a blood supply and my referral with Royal Orthopaedic is a week away and is only a telephone consultation. I have found a second smaller lump above my knee this evening that appears to have only appeared today and frankly I am petrified. Waiting on a return call from 111 as I write this.
I’m convincing myself that these, breathlessness and an 11.6 wbc as well as a ‘whooshy’ head are all just pointing to the same conclusion. I have no tests booked to get anything confirmed and I’m considering whether going private would move things quicker…
This is all incredibly difficult, how on earth does someone navigate this kind of thing?
Hi DoSan
Welcome to our online community, I hope you find it both useful and supportive.
I am Steve one of the community champions and my experience is with my wife who has Leiomyosarcoma.
Many people find the time between initial diagnosis and getting a treatment plan in place about the most difficult time of all. Sarcoma's in general are rare cancers and in the NHS there are a few specialist centers including the Royal Orthopedic.
There is a page on how soft tissue sarcomas are diagnosed here that may be helpful, including suggestions of how to get help including through this community.
With my wife there was something of a complication in that she also has sarcoidosis and some of that presents in a similar way to the sarcoma - mostly we ended up needing a sequence of CT scans to look at what was changing.
<<hugs>>
Steve
