Leiomyosarcoma

My Mother was just diagnosed with Retroperitoneal Leiomyosarcoma which has invaded her Inferior Vena Cava, and is just touching the liver, but not invaded, no other involvement seen on scans. She is 78 with well controlled Type 2 Diabetes and Osteoporosis, but otherwise in good shape. The Onco offerred nothing- no surgery, no chemo, no rads, just that she had "many months". We are getting a 2nd opinion at UCSF, but they don't appear to have a sarcoma specialist. Anyone know of sarcoma specialists in California, hopefully Northern California? Thanks for any infor Jen

 

On 7/28/2007 Nifer58 wrote:

My Mother was just diagnosed with Retroperitoneal Leiomyosarcoma which has invaded her Inferior Vena Cava, and is just touching the liver, but not invaded, no other involvement seen on scans. She is 78 with well controlled Type 2 Diabetes and Osteoporosis, but otherwise in good shape. The Onco offerred nothing- no surgery, no chemo, no rads, just that she had "many months". We are getting a 2nd opinion at UCSF, but they don't appear to have a sarcoma specialist. Anyone know of sarcoma specialists in California, hopefully Northern California? Thanks for any infor Jen

Hi Jen!

I coordinate a SF BayArea Group for Leiomyosarcoma (LMS).   I have a lot of resources for you.... email me at

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 and we can talk by phone or get together.  I have a list of sarcoma centers you should get a second opinion at.  I personally get my treatments at UCSF with Dr. Thierry Jahan - who is wonderful - but he is not the same as a sarcoma center specialist.... Write me!

Sharon 

5yr LMS survivor, stage IV

Tumor free for 3 years!