Epithelioid Sarcoma Collaborative publishes white paper that outlines challenges and suggests solutions to improve outcomes for patients with rare cancers


There is very little information about epithelioid sarcoma (ES). Because of this, the recently formed Epithelioid Sarcoma Collaborative is working to increase awareness and understanding of ES, especially among general practitioners and other health care providers who may be the first point of contact for people with the disease.

“Recommendations from the Epithelioid Sarcoma Collaborative: A White Paper” is now published in the Journal of Oncology Navigation and Survivorship. This white paper is the result of a partnership between the Epithelioid Sarcoma Collaborative and SARC (Sarcoma Alliance for Research Through Collaboration).

“Increasing awareness and understanding of soft tissue sarcoma in patients and providers can be the first step in reducing the time to a correct diagnosis and reducing barriers to timely treatment and access to expert sarcoma centers,” says Maria Voermans, an IT survivor and advocate who is the author of the white paper.

Epithelioid sarcoma (ES) is a rare soft tissue sarcoma (STS). STS comprises less than 1 percent of all cancers, but 7 to 15 percent of pediatric cancers annually. Adolescents and young adult men are most commonly affected.

Because cancer is so rare, the warning signs of STS – which include a non-sensitive mass of soft tissue of any size – are usually not recognized as malignant. In addition, the first clinicians to consult, such as general practitioners, sports physicians, or dermatologists, are generally unfamiliar with ES and / or sarcoma symptoms. This lack of familiarity with primary care all too often leads to a delay in appropriate imaging and / or biopsy. This can lead to a delayed diagnosis and absolutely affect the patient’s survival.

To understand the full range of challenges facing patients diagnosed with ES, the Epithelioid Sarcoma Collaborative – a multidisciplinary focus group of patient advocates and medical experts on sarcoma – came together to evaluate patient experiences and identify priority areas for new effort.

“This analysis and review by the Epithelioid Sarcoma Collaborative gave us an opportunity to better understand the patient’s diagnostic journey and the delays associated with achieving an accurate diagnosis and treatment. Accurate diagnosis requires a timely MRI that is accurately interpreted by a radiologist, with an appropriate biopsy by a skilled surgeon or radiologist, who is then diagnosed by a skilled sarcomatologist. These diagnoses present a particular challenge with some of the rarer and more difficult sarcoma subtypes such as ES. Successful diagnosis and treatment outcome depend on timely referral to a specialized, multidisciplinary sarcoma team, “says Ernest U. (Chappie) Conrad, MD, FACS, who currently serves as chairman of the SARC board of directors and participated in the review.

Recommendations from the Epithelioid Sarcoma Collaborative include establishing a standard of ES diagnostic for healthcare providers with symptoms such as a lump or cyst to prevent ES from going undiagnosed.

The Epithelioid Sarcoma Collaborative whitepaper is available online on JONS (https://www.jons-online.com/issues/2021/september-2021-vol-12-no-9/3914-recommendations-from-the-epithelioid-sarcoma-collaborative-a-white-paper).

To learn more about the SARC organization, its work and clinical studies, please visit the SARC website at www.sarktrials.org.

About SARC
SARC (Sarcoma Alliance for Research Through Collaboration) is a US-based, nonprofit (501 (c) (3)) sarcoma research consortium dedicated solely to promoting advances in sarcoma prevention and treatment in order to deliver patient outcomes for Improve patient and ultimately find a cure.

Given the rarity of sarcomas and the numerous histological subtypes, no single institution has sufficient patient resources for timely recording and sufficient statistical power to complete studies that provide meaningful results. Accordingly, SARC was founded in 2003 by the Sarcoma Research Community to bring together the best cancer centers in the world, supported by a centralized infrastructure for conducting collaborative sarcoma research across multiple institutions. Since its inception, SARC has successfully established itself as a leader in providing a unified platform for sarcoma professionals to collaborate and accelerate Phase I, II and III clinical trials (SARC as sponsor), correlative trials to better understand which The most effective drugs and combinations include treating patient subgroups, mentoring and fellowship programs for young researchers, and studying key biological issues in nearly 90 medical centers with specialized sarcoma programs in The United States and worldwide.

What is sarcoma?
Sarcomas are cancers of the bones of the bones (skull, vertebrae, ribs, and extremities) and of the muscles and other tissues that are attached to, support, or connect these bones. Sarcomas can occur in people of all ages. Although there are many different types of sarcoma, it is still a very rare condition. As a result, few doctors have experience handling sarcomas, so it is not uncommon for sarcoma to be difficult to diagnose. This fact simply reflects the rarity of this cancer. SARC and our staff are working to advance the science and knowledge of sarcomas.


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