Unless a diagnosis of leiomyosarcoma affects you or a loved one, you may have never heard of this rare cancer. Leiomyosarcoma is a type of soft tissue sarcoma that can have many different symptoms depending on where it appears in your body. Let’s look at the basics about this elusive yet life-threatening cancer, what causes it and how it’s treated.
What Is Leiomyosarcoma?
Even when you’re sitting still or sound asleep, your body is in constant motion. Blood pulses through your blood vessels. Food travels through your intestines. Air enters and leaves your lungs. Each of these activities requires smooth muscles.
Leiomyosarcoma grows in these smooth muscles. Its most common origin is the abdomen or uterus, though it can also occur in other smooth muscle tissue.
A fast-growing cancer, leiomyosarcoma may not cause symptoms until your tumor is quite large. Depending on where it grows, it can affect different organs or parts of the body in unique ways, so symptoms vary depending on tumor location.
Where Does Leiomyosarcoma Occur?
Leiomyosarcoma occurs in smooth muscle cells anywhere in your body, including:
- Abdomen
- Blood vessels
- Hands and feet
- Head and neck
- Trunk
- Uterus
When leiomyosarcoma metastasizes, or spreads, it may affect your liver or lungs. Unlike some cancers that travel through your lymphatic system, leiomyosarcoma often spreads through the blood vessels.
Who Can Get Leiomyosarcoma?
Both adults and children can get leiomyosarcoma, but adults have it more frequently. For most leiomyosarcomas, you are more likely to develop the disease in your 60s. Uterine leiomyosarcoma, however, is more common in the years leading up to menopause.
Researchers haven’t identified many risk factors for leiomyosarcoma. Known risk factors include:
- History of radiation exposure, including radiation therapy to treat other cancers
- History of taking tamoxifen, a breast cancer treatment
- Inherited genetic conditions such as Li-Fraumeni syndrome
When children develop leiomyosarcoma, it is often associated with a genetic condition. Radiation-related leiomyosarcoma may appear years after the initial radiation treatment.
Symptoms and Diagnosis
In its early stages, leiomyosarcoma typically doesn’t cause pain or other symptoms. As your tumor grows larger, you may feel a lump or have problems due to the tumor pressing into other nearby organs. You may experience generalized signs and symptoms, including:
- Losing weight without trying to
- Nausea and vomiting
- Pain
Uterine Leiomyosarcoma Symptoms
Soft tissue sarcomas, mostly leiomyosarcoma, make up between 3% to 7% of uterine cancers. When women have uterine sarcoma, they may experience symptoms similar to those of uterine cancer and other noncancerous conditions. Symptoms include:
- Bloating
- Changes in your bladder or bowel habits
- Feelings of fullness, pain or pressure in your pelvis
- Heavy periods
- Pain during sex
- Trouble emptying your bladder
- Unusual vaginal bleeding or discharge
These symptoms can also indicate uterine fibroids, a type of noncancerous soft-tissue growth in your uterus. Because of this similarity, it’s important to get any fibroid-like symptoms checked by your gynecologist.
Treatments for Leiomyosarcoma
Treatment for leiomyosarcoma depends on where it’s located and how far it has spread.
First-Line Treatments
Doctors will remove leiomyosarcoma tumors surgically if they’re confined to one place. Radiation treatment may be used before or after surgery if there is a possibility that all of your tumor cannot be removed.
Women with uterine leiomyosarcoma typically have surgery to remove their uterus and ovaries, though some patients receive ovary-sparing surgery.
Chemotherapy is not always effective for leiomyosarcoma, but it may be helpful if you have a tumor that is spreading quickly or cannot be completely treated with surgery. Women with uterine leiomyosarcoma may benefit from estrogen-blocking hormone therapies.
Treating Advanced Leiomyosarcoma
When cancer cells spread beyond the original tumor, leiomyosarcoma, like other cancers, is much more challenging to treat. Doctors may use chemotherapy to alleviate symptoms, known as palliative chemotherapy. New tumors may also be removed surgically if possible.
Long-Term Outcomes for Leiomyosarcoma
Treatment for leiomyosarcoma is most effective when your tumor grows on a limb or near the surface of your body. Tumors that start deep within the body, grow quickly or are larger when found are harder to treat and more likely to return.
Survival rates for leiomyosarcoma vary depending on these and other factors, but even advanced disease may be treated by ongoing surgeries as needed.
Specialized Expertise for Complex Cancers
Not many cancer centers have a specialty focus on sarcomas, or connective tissue cancers, the family of cancers that includes leiomyosarcoma. Capital Health Cancer Center offers expert sarcoma care, including advanced treatment options and a host of patient-centered services.
As a National Cancer Institute Community Oncology Research Program, Capital Health Cancer Center connects patients locally with clinical trials and treatment delivery studies from institutions across the United States. Especially for hard-to-treat cancers such as soft-tissue sarcomas, clinical trial access means patients can participate in safe, leading-edge therapies while researchers collect data to determine the treatment’s effectiveness. Participants are carefully monitored throughout their treatment, adding an extra layer of care.
Key Takeaways
Leiomyosarcoma isn’t a name you hear every day. Statistically, too, it’s rare—for instance, only about 1 in 6 million women are affected by uterine leiomyosarcoma each year.
However, being alert to any signs of cancer, even vague ones, can save your life. This is especially true of aggressive cancers with few early symptoms.
Remember:
- Don’t be afraid to tell your doctor about mild or nonspecific symptoms, such as nausea.
- If you’re a woman, take unusual bleeding seriously. “It’s probably just fibroids” isn’t a good reason to ignore pelvic symptoms.
- If you do receive a cancer diagnosis, seek care at a specialty cancer center with experts who see conditions like yours frequently.
If you’re facing a cancer diagnosis, request a consultation to discuss your treatment options with an oncologist at Capital Health Cancer Center.