Leiomyosarcoma (LMS) is a rare, aggressive cancer that forms in smooth muscles. Smooth muscles are involuntary muscles located in various parts of your body. You have smooth muscles in your hollow organs, including your:

  • Bladder
  • Blood vessels
  • Large intestine
  • Small intestine
  • Stomach
  • Uterus

LMS cancer is a type of soft tissue sarcoma. It grows quickly and can double in size in as little as one month. The cancer cells travel through your bloodstream and can spread to any soft tissue in your body.

Some people don’t develop LMS symptoms until the disease reaches an advanced stage. In these cases, leiomyosarcoma is life-threatening. But when it’s detected and treated early, recovery is possible.

A cancer diagnosis can be overwhelming. Lean on your healthcare team. They can recommend resources and support groups that may help you on your journey.

There are three subtypes of leiomyosarcoma:

  • Somatic soft tissue LMS. This affects your connective tissue. It’s the most common form of LMS. Uterine leiomyosarcoma is one example of somatic soft tissue LMS.
  • Cutaneous or subcutaneous LMS. This involves piloerector muscles in your skin and eyes. Your piloerector muscles give your skin goosebumps and make your pupils dilate.
  • LMS of a vascular origin. This forms in a major blood vessel, like your pulmonary arteries, inferior vena cava or peripheral arteries. It’s the rarest form of LMS.

Leiomyosarcoma symptoms vary depending on the size and location of the tumor. Some people don’t experience symptoms early on, but may notice certain signs as the tumor grows, like:

  • A firm, painless lump
  • Abdominal bloating
  • Fever
  • Nausea and vomiting
  • Pain
  • Tiredness
  • Weight loss

Leiomyosarcoma in your digestive system may cause:

  • Abdominal pain
  • Black stools (from blood in your poop)
  • Loss of appetite
  • Nausea and vomiting

Uterine leiomyosarcoma can cause:

  • Abnormal uterine bleeding
  • Frequent urination
  • Vaginal discharge

Experts aren’t exactly sure what causes leiomyosarcoma. It could be hereditary (meaning you inherited altered genes from your parents), or it could be because your own genes changed, causing normal cells to grow out of control and become cancer cells.

Researchers have found links between LMS and these genetic conditions:

  • Gardner syndrome
  • Gorlin syndrome
  • Hereditary retinoblastoma
  • Li-Fraumeni syndrome
  • Neurofibromatosis type 1 (NF1)
  • Tuberous sclerosis
  • Werner syndrome
 

A healthcare provider will do a physical examination and ask you about your symptoms. They’ll also review your medical history, including any past or current health conditions.

Your provider will take imaging tests to see inside your body and determine the size and location of the tumor. These imaging tests may include:

  • Angiography
  • Computed tomography (CT) scans
  • Magnetic resonance imaging (MRI)
  • PET scan

Your provider will likely need to do a biopsy, too. When testing for LMS, providers try to take small samples from several parts of the cancer. Once they have the tissue samples, they’ll send them to a pathologist for testing.

 

How is leiomyosarcoma treated?

Leiomyosarcoma treatment depends on the location and size of the tumor. Options include:

  • Surgery. When surgery is possible, it’s the go-to treatment option for leiomyosarcoma. The goal is to remove the entire tumor so that the cancer doesn’t come back.
  • Chemotherapy. Providers recommend chemotherapy when the tumor is large, or when cancer cells have spread to other parts of your body.
  • Radiation therapy. Providers might use radiation therapy before surgery (neoadjuvant therapy) to shrink the tumor, or after surgery (adjuvant therapy) to kill any remaining cancer cells.
  • Targeted therapy. Your healthcare team may recommend targeted therapy as a stand-alone therapy or in combination with other treatments.

How long does it take to recover from leiomyosarcoma treatment?

Recovery times can vary drastically depending on several factors, including:

  • The size and location of the cancer
  • The type of treatment you receive
  • Your body’s healing capacity

It could take several weeks or months to fully recover. Even after you’re feeling better, you’ll still need regular checkups to monitor your health and reduce the risk of cancer recurrence (return).

The outlook for leiomyosarcoma varies significantly depending on the stage, size and location of the tumor. In some cases, LMS is curable, especially when detected and treated early.

Treatment is more complicated when it’s discovered in the later stages. Advanced, Stage 4 leiomyosarcoma can be managed with treatment, but not cured.

What is the survival rate of leiomyosarcoma?

Leiomyosarcoma survival rates depend on several factors like:

  • Tumor size and location
  • How much of the tumor your surgeon can remove
  • Whether the cancer has spread — and if so, how far

Currently, there’s no known way to prevent leiomyosarcoma. But you can reduce your risk by avoiding risk factors whenever possible. Known leiomyosarcoma risk factors include:

  • Certain viral infections, like human herpesvirus 8 (HHV8)
  • Radiation exposure
  • Tamoxifen (commonly used to treat breast cancer)
 

When should I see my healthcare provider?

If you’re undergoing treatment for leiomyosarcoma, call your healthcare provider whenever you notice new or worsening symptoms. For example, if you notice any changes to your tumor — or if you develop severe pain, sudden weight changes or other symptoms — seek prompt medical care.

What questions should I ask my doctor?

If you have leiomyosarcoma, talking with your healthcare provider can inform, empower and help you take control of your health. Here are some questions you may want to ask:

  • Where’s my cancer located?
  • Has my cancer spread?
  • How advanced is my cancer?
  • What are my treatment options?
  • What are the risks and side effects of treatment?
  • What are the chances that my cancer will come back after treatment?
  • What’s my outlook?
  • American Society of Clinical Oncology. Sarcomas, soft tissue: coping with treatment (https://www.cancer.net/cancer-types/sarcomas-soft-tissue/coping-with-treatment). Last updated 11/2023. Accessed 3/10/2025.
  • Mangla A, Menon G, Yadav U. Leiomyosarcoma (https://www.ncbi.nlm.nih.gov/books/NBK551667/). 2024 Feb 28. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 Jan. Accessed 3/10/2025.
  • National Cancer Institute (U.S.). Soft Tissue Sarcoma – Health Professional Version (https://www.cancer.gov/types/soft-tissue-sarcoma/hp). Accessed 3/10/2025.
  • National Organization of Rare Diseases (U.S.). Leiomyosarcoma (https://rarediseases.org/rare-diseases/leiomyosarcoma/). Last updated 9/4/2012. Accessed 3/10/2025.
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