Leiomyosarcoma

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Rare Cancers

Summary Summary

Leiomyosarcoma is a rare cancerous tumor that consists of smooth (involuntary) muscle cells.^[1] Leiomyosarcoma is a type of sarcoma. It spreads through the blood stream and can affect the lungs, liver, blood vessels, or any other soft tissue in the body. The exact cause of leiomyosarcoma is not known, although genetic and environmental factors appear to be involved.^[2] It is most often found in the uterus or abdomen.^[1]

Last updated: 6/26/2015

Diagnosis Diagnosis

Making a diagnosis for a genetic or rare disease can often be challenging. Healthcare professionals typically look at a person’s medical history, symptoms, physical exam, and laboratory test results in order to make a diagnosis. The following resources provide information relating to diagnosis and testing for this condition. If you have questions about getting a diagnosis, you should contact a healthcare professional.

Testing Resources

Orphanet lists international laboratories offering diagnostic testing for this condition.

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Treatment Treatment

Treatment of leiomyosarcoma varies depending on the location and stage of the cancer. Surgery is typically the first choice for treatment, however, chemotherapy, targeted drugs, radiation therapy, and hormonal therapy may also be used to treat leiomyosarcoma.^[3]

Additional information on the treatment of intestinal leiomyosarcoma is available from Medscape Reference. You may need to register to view this online medical resource, but registration is free

Last updated: 6/26/2015

FDA-Approved Treatments

The medication(s) listed below have been approved by the Food and Drug Administration (FDA) as orphan products for treatment of this condition. Learn more orphan products.

Trabectedin (Brand name: Yondelis) - Manufactured by Janssen Research & Development, LLC
FDA-approved indication: For the treatment of patients with unresectable or metastatic liposarcoma or leiomyosarcoma who received a prior anthracycline-containing regimen.
National Library of Medicine Drug Information Portal
Medline Plus Health Information

Prognosis Prognosis

The outlook for people with leiomyosarcoma depends on various factors, including tumor location, size, and type, as well as the extent of spread. Some patients with low grade tumors or with tumors that have not spread beyond Stage I have had excellent prognoses. There are numerous long term survivors from this group. In general, high-grade tumors that have spread widely throughout the body have less favorable survival rates.^[2]

Last updated: 6/26/2015

Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

ClinicalTrials.gov lists trials that are related to Leiomyosarcoma. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.
Leiomyosarcoma.info is the research Web site of the National Leiomyosarcoma Foundation. Visit the site for research updates, clinical trial information, videos, patient registries and more.
Orphanet lists European clinical trials, research studies, and patient registries enrolling people with this condition.

Patient Registry

A registry supports research by collecting of information about patients that share something in common, such as being diagnosed with Leiomyosarcoma. The type of data collected can vary from registry to registry and is based on the goals and purpose of that registry. Some registries collect contact information while others collect more detailed medical information. Learn more about registries.

Registries for Leiomyosarcoma:
Leiomyosarcoma Patient Registry

Organizations Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

LMSarcoma Direct Research Foundation
Post Office Box 52697
Tulsa, OK 74152
Toll-free: +1-866-912-2730
Fax: +1-413-502-2241
E-mail: Contact@LMSdr.org
Website: http://www.lmsdr.org
National LeioMyoSarcoma Foundation
Annie Achee, NLMSF President
1685 S Colorado Blvd
Unit S, Suite 447
Denver, CO 80222
Telephone: +1-303-783-0924; +1-303-808-3437
E-mail: annieachee@aol.com
Website: http://www.nlmsf.org
The Liddy Shriver Sarcoma Initiative
17 Bethea Drive
Ossining, NY 10562-1620
Telephone: 914-762-3251
Website: http://sarcomahelp.org/

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Living With Living With

Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Financial Resources

The Social Security Administration has included this condition in their Compassionate Allowances Initiative. This initiative speeds up the processing of disability claims for applicants with certain medical conditions that cause severe disability. More information about Compassionate Allowances and applying for Social Security disability is available online.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public.
The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.

Selected Full-Text Journal Articles

Garau R. The medical experience of a patient with a rare disease and her family. Orphanet Journal of Rare Diseases. 2016;11:19.

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

My sister was diagnosed with a leiomyosarcoma and soon after passed away. Is there a test to screen for this? See answer
Our son has had surgery and a tumor was found on the right colon. It was removed and first thought to be a gastrointestinal stromal tumor (GIST), but because of CD117 and CD34 testing we were told it was leiomyosarcoma. We have been to 2 oncologists, one says chemo and the other says chemo is not effective for this type. We are totally confused. See answer

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References References

Chen Y. Leiomyosarcoma. MedlinePlus. March 23, 2014; http://www.nlm.nih.gov/medlineplus/ency/article/000916.htm. Accessed 6/26/2015.
What is Leiomyosarcoma?. LMSarcoma Direct Research Foundation. http://www.lmsdr.org/whatis_leiomyosarcoma.php. Accessed 6/26/2015.
Treatment Possibilities. LMSarcoma Direct Research Foundation. http://www.lmsdr.org/treatments.php. Accessed 6/26/2015.

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