Leiomyosarcoma vs pelvic masses and getting a diagnosis

I am sorry to hear your daughter is having these issues. I was diagnosed with Leiomyosarcoma in Jan 2023. Most of my left kidney was removed in March 2023 to get the tumor, however, because of a bad diagnosis from local doctors, the nodules in my lungs were ignored for 15 months. I am now stage 4 with over 15 nodules in my lungs. My greatest suggestion would be to go to Mayo for treatment. Locally, they could not even correctly identify the cancer on the biopsy, much less treat the lung nodules at all. Mayo identified the cancer and validated the lung nodules were also Leiomyosarcoma, but that was after it metastasized to my hip. Unless you live in a very large metropolis with excellent hospital research facilities, I would go to Mayo for all surgeries and treatment. I will add your daughter to my prayer list.

I am sorry to hear your daughter is having these issues. I was diagnosed with Leiomyosarcoma in Jan 2023. Most of my left kidney was removed in March 2023 to get the tumor, however, because of a bad diagnosis from local doctors, the nodules in my lungs were ignored for 15 months. I am now stage 4 with over 15 nodules in my lungs. My greatest suggestion would be to go to Mayo for treatment. Locally, they could not even correctly identify the cancer on the biopsy, much less treat the lung nodules at all. Mayo identified the cancer and validated the lung nodules were also Leiomyosarcoma, but that was after it metastasized to my hip. Unless you live in a very large metropolis with excellent hospital research facilities, I would go to Mayo for all surgeries and treatment. I will add your daughter to my prayer list.

I will second that mayo is a good choice. Any hospital that is listed as a sarcoma center is the best place to be. The top hospitals for sarcoma are md anderson (Texas), sloan kettering (ny), john hopkins in Baltimore, Mayo clinic (rochester minn) and Cleveland clinic ( Cleveland). Each state has it top hospital and you should look up the best closest to home. Where to look: see lifeRaft for gist; https://nlmsf.org/ for lms

Hello...my Wife self-discovered an abdominal mass that was eventually diagnosed as rLMS...retroperitoneal leiomyosarcoma. She had a recommeded CT scan which confirmed size and location, and was referred to a gynecological oncologist. While a regular gynecologist visit may begin the process, I'm sure she'll need to see a gynecological oncologist for confirmation and possible surgical options. There are a number of websites that provide info and a starting point. Try Googling "leiomyosarcoma" to get you started. There's also info here on the Mayo Sarcoma site as well as the general Mayo clinic site. Early detection and treatment options will be your best path now. Best of luck to you and your Daughter. It's overwhelming for sure, but there is help, hope and support out there. ❤️

Hoping and praying for successful surgery! I am hoping they find out exactly what it is, through biopsies this should tell you, scans are good to see, but cannot diagnose it. May you and your daughter have good support, loving care and receive comfort from supportive services. Best wishes for you both!!!!

Just responding about my case: diagnosis and surgery results.
I was diagnosed with LMS last January as a result of a Mayo analysis of the 7 biopses. The mass was 3"X2.5"X3" and found in the pelvis. The first action ended up being a series(25) of radiation applied. After a 5 week treatment (2 antibiotics for a blood infection), and a urology procedure of inserting 2 stents in the ureters, I had surgery on June 25. The result was not what any of us wanted: leftover pieces of the sarcoma. The problem was that the sarcoma inveloped the femoral nerve and a muscle (psoas). The nerve was not recoverable, and left me with a numb leg from the hip to the top of my ankle. Pt has been very good and encouraging. I walk with a walker now and working towards a cane. Cemo was offered, but at 77 and the descriptions of some of the affects of it, I decided not to participate.

It's not too late to start chemo. All my tumors have shrunk after 5 cycles of doxorubicin and trebectidin. On on the 6 th cycle now. Then go on maintenance chemo. I'm going to celebrate 74;in October.