What Is Leiomyosarcoma?
Leiomyosarcoma (pronounced lie-oh-my-oh-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 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 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.
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 our LMS Community Blog.
CAUSES
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.
TREATMENT
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.
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.
