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Looking for survivor stories for recurrent De-differentiated retroperitoneal liposarcoma

liposarcomasurvivor
liposarcomasurvivor CSN Member Posts: 1 Member
in Sarcoma #1

Hi there,

I’m 29 and had several liposarcoma masses removed earlier this year. They were de-differentiated (though some were well-differentiated), and were surgically removed before we knew it was cancer.

At my 6 month scan, I just found out I have a recurrence. I am heading towards chemo or radiation before another surgery.

Everything I have read on the internet signals that I have bad prognostic factors - recurrence, retroperitoneal primary site, de-differentiation, multi-focality. I feel like this can’t be good. But I’d still like to hear some stories of people who have lived full lives with this disease, so I can feel like I have something to fight for.

I just finished grad school, and have met my potential life partner. I don’t want to leave yet. I just need to hear some hope.

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  • Tbooggs
    Tbooggs CSN Member Posts: 2 Member
    #2

    Hello. Seems time has passed since your post. My name is Teresa. August 29th of 2023 I had my surgery. Removed was 6 cm tumor, spleen, left kidney with adrenal and the tail of pancreas and 2 lympnodes. Was graded at stage three due to node infiltration.

    I've had 3 month scans following my surgery. My last scan was October 2024. I've scanned clear at all and now I'm on 6 month schedule. I chose no further intervention as my oncologist explained that chemo is typically not effective and radiation was not an option due to location.

    I do hope to hear from you.

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