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Soft tissue sarcoma


Title


Categories:
Rare Cancers

Summary Summary


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Soft tissue sarcoma is a form of cancer that occurs due to abnormal and uncontrolled cell growth of the "soft tissues" of the body. These tissues connect, support and surround other body parts and may include muscle, fat, blood vessels, lymph vessels, nerves, tendons and the lining of joints. Many people with early soft tissue sarcoma have no signs or symptoms of the condition. When present, symptoms depend on the location and size of the tumor but may include a palpable lump under the skin, pain, or difficulty breathing.[1][2][3] Most cases occur sporadically in people with little to no family history of the condition. People who have previously received radiation therapy and those with certain inherited disorders (such as Gorlin syndrome, Gardner syndrome, Li-Fraumeni syndrome, Tuberous sclerosis, neurofibromatosis type 1, and Werner syndrome) have an increased risk of developing a soft tissue sarcoma.[1] The best treatment options depend on many factors but may include surgery, chemotherapy, and radiation therapy.[1][2][3]
Last updated: 10/17/2016

Treatment Treatment


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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.

  • Olaratumab (Brand name: Lartruvo) - Manufactured by Eli Lilly and Company
    FDA-approved indication: In combination with doxorubicin, for the treatment of adult patients with soft tissue sarcoma (STS) with a histologic subtype for which an anthracycline-containing regimen is appropriate and which is not amenable to curative treatment with radiotherapy or surgery.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • Pazopanib (Brand name: Votrient) - Manufactured by GlaxoSmithKline
    FDA-approved indication: Advanced soft tissue sarcoma (STS) who have received prior chemotherapy.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
Do you have updated information on this disease? We want to hear from you.

Research Research


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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 Soft tissue sarcoma. 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.

Organizations Organizations


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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

  • Sarcoma Alliance for Research through Collaboration (SARC)
    24 Frank Lloyd Wright Drive
    Lobby A, Suite 3100
    Ann Arbor, MI
    Telephone: 734.930.7600
    Fax: 734.930.7557
    E-mail: sarc@sarctrials.org
    Website: https://sarctrials.org
  • Sarcoma Foundation of America
    9899 Main Street
    Suite 204
    Damascus, MD 20872
    Telephone: 301-253-8687
    Fax: 301-253-8690
    E-mail: info@curesarcoma.org
    Website: http://www.curesarcoma.org
  • The Liddy Shriver Sarcoma Initiative
    17 Bethea Drive
    Ossining, NY 10562-1620
    Telephone: 914-762-3251
    Fax: 914-941-9181
    E-mail: http://sarcomahelp.org/about.html?tpm=1_3
    Website: http://sarcomahelp.org/
  • The Limb Preservation Foundation
    925 S Niagara Street
    Suite 610
    Denver, CO 80224
    Telephone: (303) 429-0688
    E-mail: khill@limbpreservation.org
    Website: http://limbpreservation.org/
Do you know of an organization? We want to hear from you.

Living With Living With


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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


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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

  • The American Cancer Society provides information on Soft tissue sarcoma. Please click on the link to access this resource.
  • Mayo Clinic has an information page on Soft tissue sarcoma.
  • 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.

In-Depth Information

  • 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.

News & Events News & Events


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News

  • NIH Hosts Rare Disease Day Event, Twitter Chat
    January 24, 2019

  • FDA Patient Representative Program
    January 11, 2017

GARD Answers GARD Answers


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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.

Have a question? Contact a GARD Information Specialist.

References References


  1. Adult Soft Tissue Sarcoma Treatment (PDQ®)–Health Professional Version. National Cancer Instittute. January 2016; https://www.cancer.gov/types/soft-tissue-sarcoma/hp/adult-soft-tissue-treatment-pdq.
  2. Soft tissue sarcoma. Mayo Clinic. July 2015; http://www.mayoclinic.org/diseases-conditions/soft-tissue-sarcoma/basics/definition/con-20033386.
  3. Sarcoma: Adult Soft Tissue Cancer. American Cancer Society. February 2016; http://www.cancer.org/cancer/sarcoma-adultsofttissuecancer/detailedguide/sarcoma-adult-soft-tissue-cancer-soft-tissue-sarcoma.
Do you know of a review article? We want to hear from you.
You can help advance
rare disease research!
You can help advance rare disease research!
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