Leiomyosarcoma: What can I expect now?

@johnelph, welcome. For the spread to your lungs, is it being monitored - active surveillance - or will you have to have additional treatment?

Love your positive outlook. Love at the end of your post how you want to help animals and people. Keep focusing on that positive. You got this and you have a wonderful fiancee supporting you. I would love to add you on Facebook. My name there is
Susan Harrington Ray
I will be praying God's complete healing over you.

Hello @lanewright - I'm a bit the same . I had a 5cm leiomyosarcoma on a kidney removed in May 23. and it has spread to my lungs but appears stable for the time being. By all accounts, its just a matter of time. But I notice the replies don't realy address your questions - or have I missed something?

His original tumor was behind his right axilla.

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.