Soft tissue sarcomas

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

GIST .... apparently!

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Hello all,

First time poster in this section. So here’s an introduction!

Almost a year ago I was diagnosed with breast cancer. Had a large amount of breast removed where they found a second primary cancer, so two types in one breast. What fun! 

Got through second surgery, and 4 weeks of radiotherapy all ok. Not fun but every day tried to make the best of things. 

3 weeks ago I had a reduction of my ‘good’ boob as was very uneven. Surgery went well and I thought it was time to move onwards.

10 days post surgery I developed a clot in my leg which then travelled to my lung. Was rushed to hospital with breathing difficulties. Staff brilliant and got me on the blood thinners and on the CT scan within 4 hours so all good. Was asked to return the next day as they had seen some nodules on my lungs they wanted to investigate. 

Returned the next day to find I’d been booked in for a CT scan of my abdomen, no idea why!

Back to the hospital again a week later to be told I’ve got a GIST (never even heard of them before) and to await a biopsy and PET scan to explore further. There was MDT meeting today (not sure which specialists they even are?) and I'm now waiting for a call to say what's happening.

Still in shock but busy researching everything I can! I don’t even know what questions to ask! 

Any advice would be appreciated. 

Sorry for the long intro!