1. < Sarcoma

Leiomyosarcoma: What can I expect now?

Posted by kkhersh @kkhersh, Oct 10, 2022

Diagnosed with Leiomyosarcoma back in August 2021. had surgery to remove mass in upper right groin that same month. July 29th second round of CT scans showed nodules on Right upper lung - had surgery to remove those on Sept 15.
What can I expect now ? - meeting with Medical oncologist next week .

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queensmom | @queensmom | Oct 24, 2022
In reply to @hopeful33250 "Hello @kkhersh, and welcome to Mayo Connect. I was especially interested in your post as I..." + (show)
@hopeful33250

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?

Jump to this post

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

REPLY
1 reply
designer22 | @designer22 | Oct 24, 2022

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.

REPLY
2 replies
marys1956 | @marys1956 | Oct 17, 2022
In reply to @hopeful33250 "Hello @marys1956, I appreciate you sharing more about your journey with Leiomyosarcoma. You mentioned in your..." + (show)
@hopeful33250

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?

Jump to this post

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.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 17, 2022
In reply to @marys1956 "I was diagnosed with peritoneal Leiomyosarcoma in August 2022. Sept had surgery to remove (most) tumor..." + (show)
@marys1956

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.

Jump to this post

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?

REPLY
1 reply
marys1956 | @marys1956 | Oct 17, 2022

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.

REPLY
2 replies
luna6922 | @luna6922 | Oct 12, 2022

@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!

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 11, 2022

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?

REPLY
2 replies
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