Leiomyosarcoma: What can I expect now?

I was diagnosed with LMS today. The 3cm mass was in my colon which appears to be super rare via early research. They removed it during a colonoscopy and margins were clean. My initial superficial biopsy ahead of the removal surgery came back clean and I had a clean CT scan back in mid September. When they biopsied the whole tumor after surgery they found the LMS.

Did LMS start this way for many (eg 1 mass that was removed via surgery & everything appeared good/clean) and then nodules continued to be found or appear later on? Or could the initial removal be curative? Meeting with an oncologist in the next few days. Were nodules in other areas such as lungs found via CT or other imaging methods?

I'm in my early 30s with two under two so also looking to hear stories of hope living with LMS longterm. I plan on making it to both my kids' weddings!

I am waiting for a port. Chemo will start soon. Mayo has been in touch. A nice young man named Gabriel called & got more info from me yesterday. I have some more info to fill out online today.

@nanee1, I thought I'd stop by to see how you are doing. How did your appointment go? What are your next steps?

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.