Leiomyosarcoma (LMS) Information

Leiomyosarcoma Support & Direct Research Foundation

Leiomyosarcoma (pronounced lay-oh-my-sar-coma) is a rare malignant tumor that grows from smooth muscle cells, (your involuntary muscles.) It occurs in about ten people per one million. Leiomyosarcoma is one of the more common sarcomas, accounting for about 20 percent of all the 80 types of soft tissue sarcomas. Less than 1% of all cancers are sarcomas. Leiomyosarcoma appears most often in the uterus, extremities like the leg, large blood vessels, retroperitoneum and infrequently, the bone. Leiomyosarcoma commonly spreads through the bloodstream to the lungs and liver, but at later stages can appear anywhere in the body. Both children and adults can develop leiomyosarcoma, although it predominantly occurs in adults around ages 40-60.

We are working for the cure!

Because leiomyosarcoma is so rare, it is critical to get a second opinion or treatment at a high volume sarcoma center. Patients who get treated at sarcoma centers have been shown to have better outcomes and longer survival.

Learn more about Leiomyosarcoma (LMS) symptoms, causes, and treatment.
Since 2006, LMSDR’s mission is to empower patients with information and support, fund groundbreaking LMS research, and provide a bridge between patients and researchers to collaborate on finding a cure.

Leiomyosarcoma Lifeline

Newly diagnosed with LMS? Call us for help navigating this new journey.
Caregivers are encouraged to call us too! 1-866-912-2730

LMSDR is thrilled to continue our partnership with the Broad Institute of MIT & Harvard. *WATCH* the video to learn more about The Broad’s Rare Cancer Dependency Map Initiative, which includes LMS tumors.

New therapies for LMS tumors can’t be discovered until we systematically map the best drug targets. The Rare Cancer Dependency Map Initiative is creating patient models from living tissue and using CRISPR/drug data to help researchers worldwide solve this challenge, together.

Working – not hoping – for a cure.


Choose to Trust: Faith and Pragmatism tackling Cancer

New book by LMS patient Bruce Stevens – 100% proceeds go to LMSDR
Whether as a patient or a family member, the chances are everyone will be faced with cancer at some stage in their life. Bruce shares his journey of tackling cancer warts and all, from the challenge of telling people through to coming to grips with losing control. He also explores how his Christian faith intersects with this health crisis. If you find yourself in this situation, this will really help you grapple with practical issues. BUY ON AMAZON

LMSDR JOINS NCI’s MyPart Program

Creating a bridge between patients and researchers
In the MyPART network, NCI’s mission is to engage patients as partners in rare tumor research. LMSDR is a critical bridge between patients and researchers, helping share experiences and expertise between these important stakeholders. LMSDR will participate in Rare Tumor Workshops and provide input on research issues important to LMS. We will also share MyPart clinical trials, research opportunities and news, so that you can get involved. Participate!  If you are a young adult or have a child with LMS, you can contribute to the Natural History Study of Rare Solid Tumors. You can help the researchers learn about LMS and how to best help us.

LMS Blood Drive Update

The leiomyosarcoma blood drive has been a success; over 167 samples have been collected for the circulating DNA research project. The project is spearheaded by Dr. Kristen Ganjoo and Dr. Matt van de Rijn of Stanford University, whose objective is to identify whether a treatment is working or not by looking for tumor DNA in the patient’s blood. This could potentially help patients long before they get their next CT scan. The second goal of the project is to determine if a uterine fibroid is a leiomyosarcoma tumor. Thank you, to all LMS blood donors!

Grant Awards for LMS Research 2020

$150,000 second year funding SARC for their continued work on looking at new targets for LMS, including the role of TP53, pten, p13K and mTOR.

$100,000 to Matt van de Rijn to create a blood test to distinguish leiomyosarcoma from benign uterine fibroids. This is a two-year project.

Read about past years awards:

Updates on lmsdr


Fritz Eliber as new board member of Certis Oncology

New Board Member at Certis Oncology

Fritz Eilber, MD, UCLA Surgery Division of Oncology discusses why he joined the Board of Directors at Certis Oncology. Certis provides Orthotopic PDX (Patient-Derived Xenograft) mouse models for cancer patients.

memorial donations with ribbons and cards

Memorial Donations

Our hearts break with each loss. That is why your donations go to fund LMS Research to help others and find a cure! We can help you start a TRIBUTE PAGE and ship you ribbons and donation envelopes. We want to help. Contact us at 2LMSDR@gmail.com
Leiomyosarcoma Boot Camp Webinars for The Newly Diagnosed

LMS Boot Camp Webinars!

LEARN the basics of LMS and what you should know to help you survive leiomyosarcoma. This is an entertaining crash course with info you’ll not get anywhere else.



Post Office Box 52697, Tulsa, Oklahoma 74152

Support Group

Join our private Facebook support group.

LEIOMYOSARCOMA: What You Need to Know

Remember or honor a loved one’s legacy by setting up a dedication page and requesting that donations be made in their honor or memory to help find a cure for sarcoma.