Leiomyosarcoma is a rare type of soft tissue sarcoma that forms in the smooth muscles; it is also incredibly rare. We know when it comes to complex rare cancers like this, you want a team of experts on your side who understand sarcomas and the latest treatment options. Experts at the OSUCCC – James operate central Ohio’s only Sarcoma Clinic and are specially trained to treat cancers like leiomyosarcoma.

What is leiomyosarcoma?

Leiomyosarcoma is one of the 80 subtypes of sarcoma. It is a soft tissue cancer that forms in the smooth muscles of the body. Smooth muscles are the body’s hollow organs such as the intestines, stomach or uterus. The cancer most commonly occurs in the abdomen and uterus. In general, sarcomas can form in the soft tissues or bones. In leiomyosarcoma, the cancer starts in the lining of the smooth muscles and grows out of control. The tumor tends to grow quickly. It is more commonly found in adults than in children. It makes up about 20% of all soft tissue sarcomas, but still only accounts for less than 1% of all adult cancer diagnoses.

What causes leiomyosarcoma? 

The exact cause of leiomyosarcoma is unknown. Some genetic conditions are related to it, but further research is still needed. A few of the conditions thought to contribute to leiomyosarcoma include hereditary retinoblastoma, Li-Fraumeni syndrome, neurofibromatosis type 1, Gardner syndrome and Werner syndrome.

If you have one of these conditions, you should talk to your doctor to understand the impact regarding whether you could develop a condition like leiomyosarcoma.

How fast does leiomyosarcoma spread?

In general, leiomyosarcoma forms when cancer cells replicate and grow out of control. These cancer cells are unhealthy and eventually invade surrounding healthy tissues. A tumor can then form and, if not caught early, can spread. Leiomyosarcoma in general is a more aggressive form of cancer. While each case is different, leiomyosarcomas can grow quickly.

If you have any unusual symptoms, be sure to talk to your doctor to determine a cause.

Leiomyosarcoma symptoms

Symptoms of leiomyosarcoma may vary depending on the size and location of the suspected tumor.

The most common symptoms may include:

  • A lump or bump under the skin
  • Pain or cramping near a hollow organ
  • Nausea and vomiting
  • Unexplained weight loss

If you have any of these symptoms, be sure to talk to your doctor. There can be other causes for these symptoms, so it’s important to rule them out through a proper exam and diagnosis.

How is leiomyosarcoma diagnosed?

If your doctor suspects you could have leiomyosarcoma, they may order a series of imaging tests and/or a biopsy to determine if you have this cancer.

Some of the imaging tests ordered may include:

  • Computed tomography (CT) scan
  • Magnetic resonance imaging (MRI)
  • Angiography in cases of suspected abdominal leiomyosarcomas
  • Positron emission tomography (PET) scan

Additionally, a biopsy may be ordered to further provide an understanding of the tumor. A specially trained OSUCCC – James pathologist will examine the biopsy under a microscope to determine the exact type of tumor you may have. The specific type of biopsy will be determined by your care team. If leiomyosarcoma is confirmed, a multidisciplinary team of cancer experts at the OSUCCC – James will review your specific case to determine the ideal treatment approach.

Leiomyosarcoma treatment

If you are diagnosed with leiomyosarcoma, experts at the OSUCCC – James will tailor a treatment program specifically for you. Using a multidisciplinary approach, surgical oncologists, radiation oncologists and other care providers will determine if one or more treatments would work best.

Surgery

The preferred treatment for leiomyosarcoma is surgery, but radiation or chemotherapy is often used as a supplemental treatment. The surgery necessary to treat leiomyosarcoma depends upon where it occurs. When it occurs in the extremity soft tissues (such as the arms or legs), the tumor is removed with a normal cuff of surrounding tissues to provide the best chance for complete tumor removal. Your surgeon will spare as much functional tissue as possible to allow for postoperative optimal function so that you can enjoy daily activities as much as possible. When leiomyosarcoma occurs in the abdominal and pelvic organs, the surgeon will remove the affected organ and adjacent structures, if necessary, to remove the entire tumor. Some organs such as the stomach or major blood vessels may need to be reconstructed to maintain bodily functions. If the tumor is large or may be unsafe to operate around, your team may recommend radiation or chemotherapy first to help shrink the tumor prior to surgery.

Radiation

Radiation therapy uses high-energy X-rays to specifically target the cancerous cells in the body. The radiation therapy will shrink the tumor prior to surgery or prevent it from growing back after removal.

Chemotherapy

Chemotherapy is not used for all leiomyosarcomas. It can be used when a tumor is large to help shrink it prior to surgery or if the leiomyosarcoma has spread to other parts of the body. Chemotherapy is when a special set of drugs are given through a needle in a vein (intravenously).

If you have received a sarcoma diagnosis, if you want a second opinion or if you just want to speak to a sarcoma specialist, we are here to help you. Call 800-293-5066 or 614-293-5066 to make an appointment.

Additional Resources

Types of Sarcoma
Soft Tissue Sarcoma
Gynecologic Sarcoma
Screening and Diagnosis
Clinical Trials