Warren's Story

Leiomyosarcoma

This rare type of sarcoma begins in smooth muscle cells. These cells are found in muscles that move involuntarily—without having to think about it—such as in your intestines or blood vessels. (The cells in voluntary muscles, which you use to move your body around, are different, called striated muscle cells.)

Because blood vessels run throughout your body, leiomyosarcoma (LMS) can start in any area. Once it starts, LMS can spread locally, meaning the tumor sends out tendrils that invade nearby tissue. It can also spread through the blood stream to many other places, including organs like the lungs and liver. In some people, LMS does not spread far or does not spread for many years. In some people, it spreads widely and quickly.

Treatment Options
The most successful treatment for LMS is to remove growths surgically--the earlier, the better. As with other cancers, LMS growths tend to be smaller and are less likely to have spread early on in the disease.

Chemotherapy and radiation may help shrink LMS growths, but usually the disease does not respond well to either of these treatments. So often doctors do not recommend them for LMS because both treatments can have side effects that are unpleasant or take a toll on your health in other ways. In some cases, chemotherapy and radiation may be helpful. If you have LMS, the best course is to talk with your doctor about the benefits and risks in your specific situation.

Choosing a Doctor
Only about four in every one million people develops leiomyosarcoma. As a result, few doctors have worked with patients with LMS. For the most effective care, it’s important to work with an oncologist who is experienced in treating sarcoma. Sarcoma oncologists have the latest information on developments in treatment for various types of sarcoma, including LMS.

Follow-up Care
There is no known cure for LMS yet. It is likely to return in most people who have had it. So it’s very important for those who have been in treatment to see their doctor on a regular basis to check for signs of recurrence. Return of LMS at the original site usually is not the greatest threat to a person’s health. The greatest threat usually comes from a metastasis (site of cancer spread) that becomes large or that interferes with the function of an important organ. So it’s important to monitor metastases and treat them if they threaten to cause a problem.

More Information

• Read the story of Warren Bailey, who receives treatment for LMS at Seattle Cancer Care Alliance. His treatment has included video assisted thoracic surgery, or VATS.
• The National Leiomyosarcoma Foundation works to increase awareness of LMS and raise money to fund research about the disease. 
• The L-M-SARCOMA listserv is an online support group about LMS.

August 2007