Soft tissue sarcomas

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

Soft tissue sarcoma

Posted by

My husband has been diagnosed with soft tissue sarcoma . It started with him having a pain in his side , which radiated to his stomach and back, but the pain was more in his stomach.  The GP sent him for an ultrasound which showed a cyst on his kidney.  This led to him being referred a Urologist, who ordered a CT scan which showed up the tumour!! We were told it is wrapped around the Aorta. After what seemed like a lifetime, soft tissue sarcoma was the diagnosis - we’re told it’s rare. My husbands pain is being managed now thank God - it’s distressing to see him in such pain.  He is having chemo so we wait to see if the tumour shrinks.  Has anyone else had this diagnosis and how’d you cope?  Thanks

Posted by

Hi and welcome to the community though sorry to hear about your husband. My wife's cancer is also a sarcoma more specifically Leiomyosarcoma and yes sarcomas are one of the rarer types. 

My wife has been through two different chemotherapy routines, the first was in some ways a bit too good in that it caused a totally different issue but they managed to fix that and the second has managed apparently to stop her cancer growing. We have been living with cancer now for some years and the doctors are so pleased they only now monitor her every nine months she is in really good health.

We are lucky as we live near Oxford and that is one of the specialist centres in the UK,.

i struggled at first but got a lot of help from the Maggies at our local hospital and did their living with less stress course that I found really helpful in appreciating what we have rather than looking at a bleak future that was always actually worse in my imagination than it actually turned out.



Posted by

Hi src60,

Thanks for your kind response.  It’s good to hear the treatment is working for your wife.

I’ll have to look into the course you mentioned. We’re in London at The Marsden- I’ll ask around. Sometimes I feel lost and don’t know where to turn, although family and friends are there to talk to but I don’t always have the words to express how I feel. My husband is philosophical about it all but he does get down at times and has planned for the worst.

Thanks again for the feedback.  I’ll check in again soon.