Leiomyosarcoma: What can I expect now?

I was very uncomfortable. It was 9" attached from pelvic wall to pelvic wall. 5-hour surgery to remove & I needed 5 units of blood. It was becoming an emergency with my bowel & bladder. My main symptom was nerve pain which I thought was piriformis syndrome and was trying to treat. After going to physical therapy I started fainty spotting so I went to my doctor who found this. I know that it's leiomyosarcoma and have CT scans tomorrow. I feel well now. Thanks for your reply.

Thank you so much !

Hello @queensmom and welcome to Mayo Connect. I'm sorry to hear that you are dealing with neuroendocrine carcinoid cancer (NET). You asked about my treatment, as there was no lymph node involvement and no current evidence of metastasis, I only had surgery but no other treatment.

As NETs is a rare disorder, I highly recommend that you see a NET specialist for treatment. You can find a list of specialists if you go to the Carcinoid Cancer Foundation website. Here is the website for that organization:
--Carcinoid Cancer Foundation
https://www.carcinoid.org/for-patients/
How are you feeling since your surgery? What has your doctor suggested as a follow up?

Hello @designer22 and welcome to Mayo Connect. You mentioned that you had a 9" mass removed. You must have been very uncomfortable prior to that surgery. I hope that your upcoming scans give you good results.

How are you feeling now?

Has the biopsy of the mass shown what type of tumor and/or mass it is?

Hi ,
I am also diagnosed with neuroendocrine carcinoid cancer which also involve two lymph nodes . How was your treatment? What to expect? Thanks

Wondering what you found out? I was just diagnosed and had a 9" mass removed from my abdomen after having a hysterectomy and 3 lbs of fibroids removed 3 years ago. I have scans in a couple days so don't know much yet.

Yes, she knows. My gynecological oncologist is Dr Melissa Ann Geller at the Masonic Cancer Center, University of MN-Mpls east bank campus. I will be getting Gemzar & Taxotere.

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!