Leiomyosarcoma (LMS) Information

Leiomyosarcoma (pronounced lay-oh-my-sar-coma) is an uncommon malignant tumor that grows from smooth muscle cells, (your involuntary muscles.) Leiomyosarcoma is one of the more common sarcomas, accounting for about 20 percent of all the 70 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 blood stream to the lungs and liver, but at later stages can appear anywhere in the body. Both children and adults can develop leiomyosarcoma, although it predominately occurs in adults around ages 40-60. Newly diagnosed with LMS? Call us for help navigating this new journey. Caregivers are encouraged to call us too! 1-866-912-2730

picture of a Leiomyosarcoma infected foot leiomyosarcoma information

Survival Rates

Leiomyosarcoma is like most forms of cancer, in that its survival rate is largely dependent on when you discover it. The earlier the better.

According to WebMD, the approximate breakdown of survival percentages for patients diagnosed with leiomyosarcoma in a five-year window looks like this:

  • Localized: if the tumor was caught early and didn’t have a chance to spread, there’s a 63% survival rate.
  • Regional: if the tumor was able to spread some, but not get farther than the region where it first originated, a patient has a 36% chance of surviving.
  • Distant: once the tumor has been able to spread to other parts of the body, surveys show that the survival rate drops to 14%.

Long Term Survivors

These numbers need to be updated. With newer treatments and more research, there has been in the last ten years, an increase in long term survivors. You can read their stories in each monthly issue of the LMSeAlerts newsletter.


Researchers know that leiomyosarcoma is the result of cell DNA mutations. However, what causes that mutation is not absolutely known. These genetic changes could spontaneously develop, be environmentally induced by radiation treatments at a younger age, or be the result of exposures to carcinogenic agents such as pesticides and weed killers. A breast cancer drug called tamoxifen has been linked to uterine leiomyosarcoma. Other researchers suspect this gene mutation could be inherited from a parent. There are a few related disorders which run in families: retinoblastoma, Li-Fraumeni syndrome, Gardner’s syndrome and Werner’s syndrome.


Leiomyosarcoma can be an aggressive cancer with a high recurrence rate of 50-70%. It can be very unpredictable, staying dormant for years and then reappearing even 15 – 20 years later. Therefore, it is recommended that follow-up surveillance be initially frequent and long term. Most of these tumors are often chemo and radiation resistant, though each case is different and results can vary widely. The best outcomes occur when it can be removed surgically with wide margins early, while small and still in one place. Even after spread to distant organs, long term survival can sometimes be achieved with repeated surgeries alone. Leiomyosarcoma of  the uterine origin frequently, but not always, responds to estrogen blockers called aromatase inhiibitors, if the tumor expresses a high percentage of estrogen and progesterone receptors.


Hormonal Blockade papers pictureBelow are the more common drugs – chemotherapy, targeted and immunotherapy agents used for leiomyosarcoma. The combination of gemzar and taxotere (gem/tax) has the highest response rate. However, we urge you to get your own tumor profiled. This testing may indicate a matched drug that will be effective for your specific and unique tumor. For information on testing your tumor, see LMS Boot Camp webinar #3. Surgery remains the most effective type of treatment for leiomyosarcoma. When surgery is not possible, discuss interventional radiology options as well as chemotherapy, see LMS Boot Camp webinar #4.


(Cytotoxic chemotherapy- kills all fast growing healthy and cancerous cells in your body)

  • Adriamycin/doxorubicin
  • Aldoxorubicin
  • Doxil/doxorubicin liposomal
  • DTIC/decarbazine
  • Ellence/epirubicin
  • Gemzar/gembcitabene
  • Halaven/erubulin
  • Ifex/ifosfamide
  • Taxotere/docetaxol
  • Temodar/temozolomide
  • Yondelis/trabectedin (specifically approved for leiomyosarcoma)



(Disrupts pathways to cancer cell growth)

  • Avastin/bevacizumab/ – angiogenesis inhibitor targets VEGF-A
  • Nexavar/sorafenib – tyrosine kinase inhibitor, angiogenesis inhibitor, VEGF inhibitor
  • Stivarga/regorafenib – multi-kinase inhibitor
  • Sutent/Sunitinib/SU11248 – tyrosine kinase inhibitor, VEGF & angiogenesis inhibitor
  • Votrient/pazopanib – votrient targets tyrosine kinases


(These drugs help your immune system to recognize and destroy cancer cells)

  • Keytruda/pembrolizumab – monoclonal antibody targeting PD1 receptor
  • Lartruvo/olaratumab – monoclonal antibody targeting PDGF receptor
  • Opdivo/nivolumab – monoclonal antibody targeting PD1 receptor / check point inhibitor
  • Yervoy/ipilimumab – monoclonal antibody targeting CTLA-4 receptor


Hormonal Blockade

(Affects tumor growth by blocking hormones and hormone receptors)

  • Arimidex/anastrozole – aromatase inhibitor
  • Aromasin/exemestane – aromatase inhibitor – irreversible
  • Evista/raloxifene – estrogen receptor modulator
  • Faslodex/fulvestrant – estrogen receptor modulator
  • Femara/letrozole – aromatase inhibitor
  • Lupron/leuprolide – shuts down ovary estrogen production temporarily
  • Megace/megastrol – progesterone analog
  • Nolvadex/tamoxifen –(not for uterine LMS) selective estrogen-receptor modulator



(Drug agents added to protect healthy cells during cytotoxic chemotherapy)

  • Mesna/mesnex – bladder chemoprotectant (ifosfomide and cyclophosphamide)
  • Dexrazoxane – cardio and vascular chemoprotectant (doxorubicin)
  • Coumadin/warfarin – anticoagulent
  • Decadron/dexamethasone – adrenal corticosteriod supplement
  • Neupogen/filgrastim – white cell production booster
  • Neulasta/pegfilgrastim – white cell production booster
  • Leukine/sargramostim – white cell production booster
  • Zometa/zoledronic acid//reclast – bone and serum calcium related
  • Zoladex/goserelin – ovarian estrogen production inhibitor

For drugs in the development stage, do a search on Clinicaltrials.gov. Go to our clinical trials page for an overview on how trials work.

Sarcoma Experts and Centers

Because of its rarity and difficulty to treat, leiomyosarcoma patients should seek a consultation and be seen by sarcoma experts at sarcoma centers. Studies show that patients who are seen at high volume sarcoma centers survive longer.

See uterine leiomyosarcoma (uLMS) information.

For more information on leiomyosarcoma, please watch the LMS Boot Camp webinars.


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LEIOMYOSARCOMA: What You Need to Know

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