Leiomyosarcoma: What can I expect now?

Mayo is not an option because of my insurance, however, Honor Health sent my biopsy results to Mayo for a second opinion.
I have an appt Wednesday with a Dr associated with Virginia Piper Cancer Center.
I have been tired & having pain for a few months. Long story short. I was referred to a gastro Dr. A waste of time, take prilosec
for 6 wks. I found another Dr who did a ct scan & a mass was found on my liver. I have a pretty positive attitude but I have age working against me. Thank you for any info you can share.

@nanee1, if Mayo Clinic is an option for you, you may consider requesting an appointment with our cancer specialists. There are 3 locations in Arizona, Florida and Minnesota. Learn more here: http://mayocl.in/1mtmR63

Are you currently in the care of a cancer specialist? How was your cancer discovered?

@smcquaig, how is your husband doing with chemo? How are you doing?

I have just been diagonosed with this cancer. I would like to find a Dr who specializes in Leiomayosarcoma. Blessings to you.

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.

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, @marys1956, I was diagnosed with 4B LMS in June 2022 and am in chemo also. Thanks for sharing your experience. I hope you are doing well.

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.

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 need to know what to expect to experience when leiomyosarcoma has already moved into lungs. I realize survival is not likely but what will I experience? A painful drawn out event? A quick end? Loss of body control? Etc. I am finding nothing online that answer those questions