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Leiomyosarcoma: What can I expect now?

Sarcoma | Last Active: Feb 27 11:42am | Replies (59)
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@ksocha91

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!

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Replies to "I was diagnosed with LMS today. The 3cm mass was in my colon which appears to..."
Teresa, Volunteer Mentor | @hopeful33250 | Nov 2, 2023

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?

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nanee1 | @nanee1 | Nov 11, 2023

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!

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