Welcome, @lanewright. You're so right that getting answers about what to expect at the end are hard to find online.

I moved your post about leiomyosarcoma to this existing discussion in the Cancer group:
- Leiomyosarcoma: What can I expect now? https://connect.mayoclinic.org/discussion/leiomyosarcoma-1/

I did this so you can read previous posts and connect more easily with members like @kkhersh @luna6922 @marys1956 @designer22 @stephanie27 @designer22, some of whom, like you have leiomyosarcoma that has spread into the lungs.

Knowing what to expect can help you prepare for the best ending possible. While not specifically about sarcoma, I think you might appreciate this related discussion in the Lung Cancer group too:
- Ashamed: I think about (and plan for) dying. Do you? https://connect.mayoclinic.org/discussion/ashamed/

So you see? You've come to the right place where people talk about the tough stuff openly.

Lane, can you share a bit more about yourself? Is this a recent diagnosis for you or a recurrence? What treatment options are available for you?

I don't know this answer, but I'll say hi. My mom was recently diagnosed with leiomyosarcoma, and we go to the sarcoma specialist this upcoming Tuesday to get our "next steps". It's the first time we've seen any form of oncologist, so I'm a bit anxious. I'm on here to get any information I can along the way. I'm so sorry to hear about the spread to the lungs. Hugs.

Hi, @lanewright, I also have LMS that has spread to the lungs. I couldn't find much information on the experience of progression either. I may ask my oncologist in our next visit. I'd be interested to share what I learn. Ok also check out the links to others' posts.

Hi @lanewright, I wanted to check in first to see how you are doing. Hopefully your doctor has found a treatment that is working for you. My husband lost his leg to LMS in March 2023, we found it had spread to both lungs and had 1 of 3 nodules removed in June. We went back for a follow up scan last week (August) and found that he now has multiple new nodules and they are growing. With surgery no longer an option he is set to start chemo next week, they plan to do 2 rounds then another CT to see if it is working before continuing. Like you, we were given little hope and have found it extremely hard to find any information online about LMS treatments, survival or what to expect. We are hoping to visit Mayo for a second opinion, mainly to confirm that the path we are on is the correct one. Hope you are doing well and we are sending prayers your way.

Hello @lanewright - I'm a bit the same . I had a 5cm leiomyosarcoma on a kidney removed in May 23. and it has spread to my lungs but appears stable for the time being. By all accounts, its just a matter of time. But I notice the replies don't realy address your questions - or have I missed something?