Leiomyosarcoma: What can I expect now?

Where was the site of your son's original tumor? How is he doing with the chemo? He, and you, are in my thoughts and prayers.

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.

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

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.

Hello @kkhersh, and welcome to Mayo Connect. I was especially interested in your post as I have also had a rare form of cancer, neuroendocrine tumors/carcinoid cancer. Cancer is a difficult journey to travel and when it is rare it can lead to confusion and a lot of unanswered questions.

I looked on the Mayo Clinic website and found some information that might be helpful to you:
--Leiomyosarcoma
https://www.mayoclinic.org/diseases-conditions/leiomyosarcoma/cdc-20387733
@kkhersh,
What do you currently know about this disorder? Do you have a list of questions when you meet with the medical oncologist next week?

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!