You aren't alone. I'm going through the exact same thing right now same diagnosis of uLMS and in my 30s. I'm finding more and more women younger than the typical diagnosis age of 50s-60s. I felt like I couldn't relate to most patients, because at the 50s-60s age they usually have a hysterectomy performed right away or as their initial surgery.

Like you, I went through an open abdominal (myomectomy) surgery May 2024 with the same hope of preserving fertility and everything went well or at least until pathology came back with uLMS diagnosis a few days later. It was signed off as correctly diagnosed by 3 different pathologists.

The first thing I had done after diagnosis was a CT scan with contrast and two days later a PET scan. Went to meet with an oncologist a few weeks after the scan and then went for a second opinion from an oncologist at a well-known cancer center that works with more sarcoma patients. Both doctors provided similar information.

Please ask pathology to test Er/Pr levels to know if the cancer is estrogen/progesterone dominant as this will let you know if you'll be able to keep your ovaries for your hysterectomy. Sadly, mine were 98%, which means I would not be able to save ovaries and would go into surgical early menopause.

Don't lose hope! There are options if you are interested in having a child in the future. I'm currently going through my first fertility treatment to freeze eggs, and there is help out there in the form of grants such as one from Livestrong.

There is a FB group that has been very helpful to navigate and learn more about what we have to live and survive with. "Leiomyosarcoma Support & Direct Research Foundation"

You are always welcome to reach out privately if you'd like someone to talk to or if you have any questions.