Leiomyosarcoma: What can I expect now?

I was diagnosed with uterine leiomyosarcoma this past fall. I had a total radical hysterectomy. Appendectomy, partial myomectomy, at Dearborn Corewell/Beaumont here in Michigan. The Surgeon was able to get"95". He knew he left cells behind he couldn't access. I switched treatment centers to Karmanos Flint location to be closer to home. I have felt comfortable and respected their ability to work together and obvious competence. The Surgeon in the place upset me, though...when he said a week and a half ago that going in surgically for the rest would not be a viable alternative, in his opinion. My morbid obesity complicates being able to visualize when he would get in there, he worries about my ability to tolerate another major surgery, etc. I was crushed because I have stuck in my mind the only way to be cured of this rare, aggressive cancer, is to get it all out of there. I start radiation this week. Today they just take pictures, to ascertain the positioning fits the treatment plan the radiologist developed. I had the tattoo markers put on a couple of weeks ago. After thirty radiation treatments, the general plan is to go on to chemo. I feel lost on a fog of uncertainty. But determined to do the best I can to get well. My mobility is poor, past spinal issues, fibromyalgia, osteoarthritis. I am frustrated I can't exercise more and get stronger. I will be 65 February 25th. I do have a supportive fiancé, a lot of emotional support pets, household cleaning help, and many supportive folks following my journey on FB I have goals and desires for after treatment, like to help animals and people, I used to teach and was a therapist...much to yet do and enjoy.

Thanks for sharing. Praying you are a miracle and the chemo works wonders.

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.

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!!

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!

Thanks for the quick reply! I’ll definitely keep you updated as I learn more. @hopeful33250

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 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?