Hello

Hi Freya_tilly 

Welcome to our community, I hope you find it both informative and supportive.

I am Steve, one of the community champions and my experience of cancer is via my wife who also has Leiomyosarcoma - hers was only discovered after it had spead so she has quite a few lung mets.

She was given doxyrubicin and it worked if anything rather too well in that some of the cancer it killed was part of the lung wall and so she had a collapsed lung and so that treatment was discontinued. They managed to fix up the lungs though and then they tried single agent gemcatabine and that managed to put her cancer to sleep and it has been like that for over 10 years now. Janice says the cancer is not bothering her and she is not bothering it.

One of the more interesting aspects I found was whenever Janice saw a new doctor how they would reach for the compuer to lookup Leiomyosarcoma.

<<hugs>>

Steve

That's an amazing story and very inspiring to me at the start of this journey. All the best to your wife.

Hi freya, my husband also had leiomyosarcoma, (retroperitoneal) which ultimately spread to lung, liver kidneys. He was not able to have doxorubicin, which I think is the chemo of choice so best of everuthing with the treatment and side effects, I hope it is able to keep this nasty cancer at bay for a long while for you. X

I find this reply very inspiring. I'm in need of seeing some hopeful stories and cases that exist out there. I was treated throughout most of 2025 with radiotherapy/surgery/chemo for a pleomorphic liposarcoma. I was told I was in remission in Jan 2026, but I've very recently now been told I now have lung mets. I feel very scared, and am exploring all available options open to me - I only found out this week so no treatment plan confirmed yet and they are doing another CT chest scan in 8 weeks time to further judge the rate of growth. I am 39 and have 3 very young children aged 6, 4 & 2 - I just HAVE to be here for them growing up, so am willing to do whatever I possibly can. Does anyone have any more success stories to share with treatment for lung mets that have had many more years of survival?