Soft tissue sarcomas

A place for anyone affected by any type of soft tissue sarcoma to support one another, ask questions, and share experiences.


Posted by

Hi really not sure what to think. After an MRI Tuesday I was told Friday it may be a sarcoma and I am being referred to Birmingham. The mass is in my abdomen. I have been under a consultant for 6 months who after ultra sound and CT has reassured me all along the mass isn’t anything to worry about (until now). I have been told for 6 months it’s an endometria. Needless to say I am now terrified, I feel like I am going to leave my kids without a mum. I’m angry that despite my protests my diagnosis has taken so long (and still isn’t confirmed). I am told the mass is 5cm on the mri and was the same size on the CT 6 weeks ago. They also said they can’t see any spread on the MRI. Is this good? It’s the only thing I am clinging on to. Since I was told Friday I have started feeling tired and ill, not sure if it’s in my mind or I am actually feeling it. Haven’t really eaten for 4 days and have had broken sleep with the anxiety / stress.  Hoping to find some support / hope on here. I’m going out of my mind. 

Posted by

Hi , sorry to hear that you have this worry, hopefully they are just being extra careful and there is a considerable focus on sarcoma at the moment. That the mass was the same size across the two scans sounds like fairly good news. 

We all remember the challenge though of going through the steps to either get a diagnosis or an all clear (even though of course that still leaves the question of what it actually is); in my wife's case the diagnosis was in some ways a relief as we finally knew what we were dealing with.

With my wife two rounds of chemotherapy have rendered the cancer stable and we have been living with rather than dying from for aboutb 6 years.