Leiomyosarcoma: What can I expect now?

Hello @marys1956,

I appreciate you sharing more about your journey with Leiomyosarcoma.

You mentioned in your profile that your mother was prescribed diethylstilbestrol (DE.S.) while pregnant with you. I'm wondering if your doctors know if there is a connection between the DES and your cancer history.

Has your oncologist shared with you the type of chemo you will have?

I was diagnosed with peritoneal Leiomyosarcoma in August 2022. Sept had surgery to remove (most) tumor and repair damage to areas tumor stuck to. Have experienced post-surgery complications. Chest port is being placed end of this week, then chemo treatments. Nodules on right lung and liver. Leiomyosarcoma is Stage 4. Happy to follow you all.

@kkhersh hello. I too have leiomyosarcoma and had 2 nodules removed from my right lung on 3 October. I have been told that there is not any treatment except to keep removing nodules as they appear. I'm curious what your experience has been. I really appreciate your post as I feel like I'm floundering to get answers. Enjoy your day!

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?