What is Leiomyosarcoma?


With such a complicated name, the condition known as Leiomyosarcoma  (which is pronounced lay-oh-my-sar-coma) can be difficult to immediately define. In order to simplify it and make it easier to understand, it is best to break it into several words.


Let’s start with the one most people are familiar with sarcoma. A sarcoma is a type of malignant tumor, meaning that it is a form of cancer, that affects the supportive tissues of the body. This is why you can hear about sarcomas of the bone, skin, blood vessels and more. The word’s origins are Greek and it means “fleshy growth”.  (Entymologyonline, 2015)

This tells us that Leiomyosarcoma is a form of cancer and that it involves some of the connective tissues of the body. The rest of the word explains just what sort of cancer it is since leio means “smooth” and myo means “muscle”. It is a cancer of the smooth muscle of the body. However, it is not just in any smooth muscle that Leiomyosarcoma, or LMS appears; it strikes what are known as the “involuntary” muscles of the body. The body has two forms of muscle – voluntary and involuntary. When you flex your arm muscles or intentionally blink your eyes, it is because you have muscles that you can control voluntarily. When you digest food or when your skin makes goose bumps, it is done using muscles the function involuntarily. You have no control over them.

The American Cancer Society estimates for ovarian cancer in the United States for 2019 are:

About 22,530 women will receive a new diagnosis of ovarian cancer.

About 13,980 women will die from ovarian cancer.

The involuntary muscles are found throughout the human body, including:

  • Lungs

  • Stomach

  • Intestines

  • Skin

  • All blood vessels

  • Liver

  • Uterus

  • And other areas of the body where soft tissue is found

These muscles are not controlled by the brain but are instead triggered through a long list of possible stimuli. As the most basic example, if you eat something your salivary glands flood your mouth with saliva and your digestive tract begins to contract in order to properly digest the food. Your brain is not performing these functions consciously, and it is the stimulus of the food that causes these things to occur.

What Happens with LMS?

Cancer is a very general term used to describe a malfunction in normal cellular growth.  This results in tumors that can invade tissue and spread, which is known as metastasizing. This process can happen through the body’s lymphatic system, or even through the blood stream. In the case of LMS, it is believed that the disease will tend to spread or metastasize via the bloodstream rather than the lymphatic channels. However, there are some rare instances when it has spread through the lymphatic system.

Generally, you may develop LMS anywhere there is smooth muscle, and since blood vessels are made of smooth muscle, it generally means you can develop the disease in all parts of the body. However, the most common location for it is the uterus. (WebMD 2015). It is also common to the gastrointestinal tract, but that has recently been reclassified as an entirely separate disease with a promising and life-saving new treatment.

Causes and Treatments

One thing that medical experts have yet to determine about LMS is its precise causes. Currently, there is no clear understanding of precisely why patients develop the condition. Though genetics have been identified as a possible factor, others point towards radiation exposure, chemical exposure, and other causes, but no definitive cause has been named.

It is a relatively rare form of cancer, and it is seen as an aggressive one. There is no standard outcome from treatment since LMS varies widely from case to case and treatments vary as well. This is due to the fact that it appears in different locations and may not spread at all, while other cases of it demonstrate a tendency towards metastasizing. There is a wide range of treatment programs, but no specific protocol due to the ways this disease appears. However, a team approach is the most commonly used.


Entymologyonline.com. sarcoma. 2015. http://www.etymonline.com/index.php?term=sarcoma

WebMD. Leiomyosarcoma. 2015. http://www.webmd.com/cancer/leiomyosarcoma-general


Early Detection, Diagnosis, and Staging

Detection and Diagnosis

Catching cancer early often allows for more treatment options. Some early cancers may have signs and symptoms that can be noticed, but that is not always the case. Early cancers of the ovaries often cause no symptoms. Symptoms of ovarian cancer can also be caused by other, less serious conditions. By the time ovarian cancer is considered as a possible cause of these symptoms, it usually has already spread. Also, some types of ovarian cancer can rapidly spread to nearby organs. Prompt attention to symptoms may improve the odds of early diagnosis and successful treatment. If you have symptoms similar to those of ovarian cancer almost daily for more than a few weeks, report them right away to your health care professional.

Screening tests for ovarian cancer

Screening tests and exams are used to detect a disease, like cancer, in people who don’t have any symptoms. (For example, a mammogram can often detect breast cancer in its earliest stage, even before a doctor can feel the cancer.) 

There has been a lot of research to develop a screening test for ovarian cancer, but there hasn’t been much success so far. The 2 tests used most often (in addition to a complete pelvic exam) to screen for ovarian cancer are transvaginal ultrasound (TVUS) and the CA-125 blood test. 

  • TVUS (transvaginal ultrasound) is a test that uses sound waves to look at the uterus, fallopian tubes, and ovaries by putting an ultrasound wand into the vagina. It can help find a mass (tumor) in the ovary, but it can't actually tell if a mass is cancer or benign. When it is used for screening, most of the masses found are not cancer.

  • The CA-125 blood test measures the amount of a protein called CA-125 in the blood. Many women with ovarian cancer have high levels of CA-125. This test can be useful as a tumor marker to help guide treatment in women known to have ovarian cancer, because a high level often goes down if treatment is working. But checking CA-125 levels has not been found to be as useful as a screening test for ovarian cancer. The problem with using this test for ovarian cancer screening is that high levels of CA-125 is more often caused by common conditions such as endometriosis and pelvic inflammatory disease. Also, not everyone who has ovarian cancer has a high CA-125 level. When someone who is not known to have ovarian cancer has an abnormal CA-125 level, the doctor might repeat the test (to make sure the result is correct) and may consider ordering a transvaginal ultrasound test.

Better ways to screen for ovarian cancer are being researched but currently there are no reliable screening tests. Hopefully, improvements in screening tests will eventually lead to fewer deaths from ovarian cancer. 

If you're at average risk

There are no recommended screening tests for ovarian cancer for women who do not have symptoms and are not at high risk of developing ovarian cancer. In studies of women at average risk of ovarian cancer, using TVUS and CA-125 for screening led to more testing and sometimes more surgeries, but did not lower the number of deaths caused by ovarian cancer. For that reason, no major medical or professional organization recommends the routine use of TVUS or the CA-125 blood test to screen for ovarian cancer in women at average risk.

If you're at high risk 

Some organizations state that TVUS and CA-125 may be offered to screen women who have a high risk of ovarian cancer due to an inherited genetic syndrome such as Lynch syndrome, BRCA gene mutations or a strong family history of breast and ovarian cancer. Still, even in these women, it has not been proven that using these tests for screening lowers their chances of dying from ovarian cancer.

Screening tests for germ cell tumors/stromal tumors

There are no recommended screening tests for germ cell tumors or stromal tumors. Some germ cell cancers release certain protein markers such as human chorionic gonadotropin (HCG) and alpha-fetoprotein (AFP) into the blood. After these tumors have been treated by surgery and chemotherapy, blood tests for these markers can be used to see if treatment is working and to determine if the cancer is coming back.

Stages and Outlook (Prognosis)

Accurate staging is important in helping you and your doctor understand the chances that your cancer treatment will be curative. 

One of the first things you’ll want to know is the stage of your ovarian cancer. Staging is a way of describing how far the cancer has spread and can indicate how aggressive your cancer is. Knowing the stage helps doctors formulate a treatment plan and gives you some idea of what to expect. 

Ovarian cancer is primarily staged using the FIGO (International Federation of Gynecology and Obstetrics) staging system. The system is based mainly on a physical exam and other tests that measure:

  • the size of the tumor

  • how deeply the tumor has invaded tissues in and around the ovaries

  • the cancer’s spread to distant areas of the body (metastasis)

Questions to Ask About Ovarian Cancer

Here are some questions you can ask your cancer care team to help you better understand your cancer diagnosis and treatment options. 

  1. Has my ovarian cancer spread?

  2. Do I have to have both of my ovaries removed? If so, will I have hot flashes?

  3. How confident are you that all of the cancer has been removed?

  4. What are my treatment options? Surgery? Chemotherapy? Radiation Therapy? Targeted therapy? Hormone therapy?

  5. How long will I have to undergo chemotherapy?

  6. What side effects should I look for? Are there ways to minimize these side effects?

  7. Will I need any additional surgery?

  8. Should I be tested for the BRCA-1 BRCA-2 mutations? What will the results tell me?

  9. What signs should I look for that might indicate the ovarian cancer has come back?

  10. How often should I come in for follow-up visits?