Leiomyosarcoma: What can I expect now?

@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?

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.

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!

Hello @ksocha91 and welcome to Mayo Connect. You are asking good questions, and I can certainly understand your concerns. While I've not had the same type of cancer you do, I have had a rare form of cancer of the upper digestive tract, and I do understand how you need to connect with others who are also following the same path. I looked on Mayo Clinic's website and found some information about LMS. Here is the link, https://www.mayoclinic.org/diseases-conditions/leiomyosarcoma/cdc-20387733

While we wait for others in the group to post with you about their experiences (like @nanee1 @smcquaig and @futureperfect). Please remember, though, that each person's cancer experience is different. It depends on the staging of the tumor, etc.

I see that you are meeting with an oncologist soon. Bring your list of questions with you. I look forward to hearing from you again. I hope that the appointment with the oncologist gives you some direction with the type of follow-up and/or treatment needed.

I look forward to hearing from you. Will you post again with any questions and also post after your oncologist appointment?

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 hope your meeting with the Oncologist was encourging. It is important to have a positive attitude and believe that you will have a positive outcome. Prayer helps.
I just had my third chemo & will have CT Scans before the next chemo is due.
I also created a little English Bulldog called Chemo Carl. He is wearing pink boxing gloves has a mean look & he is knocking down the cancer cells. Maybe a little silly, but we need all the help we can get!

Thank you for the encouragement! My
CT was clear post resection so we’ll do followup scans every 3 mo. For now the recommendation is to not do chemo nor radiation.

If I may ask, why was chemo recommended in your case? I pray the scan goes well!

Chemo Carl sounds fun!!

My cancer has spread, it started with a mass on my liver and has shown up in other places. Chemo has been rough but it seems the only choice for now.
I am hanging in and hoping for a good turnout. Maybe a miracle!
You are so young, so happy it was discovered in a timely manner.
Keep me informed. Hugs.