Uterine leiomyosarcoma with lung metastasis: Treatment options?
Dec 2023 10cm fibroid that by March 2024 resulted in full hysterectomy and uterine leiomyosarcoma diagnosis. May x-ray clear however new Oct CT 5months shows 35 lung lesions. Some 1x2 cm. Bloodwork normal. Lung function exactly the same. I feel fine -but apparently I'm not. Is anyone familiar with leiomyosarcoma metastasizing to the lungs ? Has it been that fast? What options are available ? Is there any new research that is promising ? Why do I feel fine ? What else can I do?
Interested in more discussions like this? Go to the Sarcoma Support Group.
Connect

I’m sorry you’re having to go through this. Did you, by chance, have genomic testing of the tumor?
-
Like -
Helpful -
Hug
1 Reaction@katie80ncr67, did you have a follow-up with the surgeon after the hytserectomy in November to review the pathology report? Did you have further imaging studies to determine if the spots in the chest were benign lung nodules or related to the cancer?
-
Like -
Helpful -
Hug
1 Reaction@mcwjr189 oh my gosh that’s so wonderful to know! I celebrate this for you! I’ve begun the process of seeing if I could work with them so we ll see! Can’t wait for that next scan 🙂
@keirahaley
I am feeling great. Especially the last five days. No chemo or radiation. I could tell my body has been fighting hard but now it feels like I’ve won. Get a new scan at the end of Jan
-
Like -
Helpful -
Hug
3 Reactions@mcwjr189 gosh, sorry your going through it too, thank you for sharing! Immunocene looks like it could be great! I’m optimistic too. Hope to check in with you soon about your experience 🙂
@keirahaley
I started with a very rare malignant solitary fibrous tumor in my liver which has metastasized to my lungs. My cancer is a sarcoma
-
Like -
Helpful -
Hug
1 Reaction@mcwjr189 also, may I ask your type of C? I’m low grade ovarian serous carcinoma, IV 🙁
@mcwjr189 oh wow! I’m sending you so much good vibes! I’ve been trying so many things and I just don’t know if anything is working. Little things seem to keep appearing, yet I’m told I’m mostly stable but it’s confusing to discover new small lesions… so I’m uncomfortable taking the wait and see approach … I’ve submitted an application to immunocene, will you let me know how it’s going for you?
@keirahaley so far so good. I received a booster vaccine in October and an immunotherapy treatment as well. I can tell my body is engaged in a battle but am optimistic
-
Like -
Helpful -
Hug
3 Reactions@mcwjr189 how is that treatment going so far? ❤️🙏🏼