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How to speak ES A guide to 

helpful terms

You're not alone with epithelioid sarcoma (ES)

TalkES is your dedicated resource for information, community, and understanding throughout your epithelioid sarcoma journey

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Being diagnosed with a rare cancer like epithelioid sarcoma (ES) can feel overwhelming, and finding reliable information about it may seem daunting. You might feel unsure, anxious, or lonely – but you are not alone. TalkES includes resources to support you at every step of your journey, with information to help you understand ES, as well as advice on questions to discuss with your doctor.

You’re a part of a community that cares.

We want to encourage you to talk openly with your doctors, family, and others who have ES. By sharing your experiences and concerns, you may feel supported and better understood.

Explore the facts you need to know about ES

How to speak ES A guide to 

helpful terms

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How to speak epithelioid sarcoma (ES)

A guide to some helpful terms

Biopsy

A procedure to remove a tiny piece of tissue from the body so it can be examined under a microscope.1

Bone sarcoma

A cancer of the bone that usually affects the large bones of the arm or leg. Also referred to as osteosarcoma or osteogenic sarcoma.2

Cancer

A type of disease that happens when cells in the body divide and grow out of control or do not die when they naturally should.3

Computed tomography (CT)

A scan that uses X-rays and computer technology to take detailed pictures of the inside of the body.4

Distal ES

The most common type of ES that typically affects the hands, arms, feet, legs, and other areas further away from the center of the body.5,6

Epithelioid sarcoma (ES)

A rare type of cancer that forms in the soft tissues of the body. It may start in the soft tissue under the skin of a finger, hand, arm, leg, or foot.5,6

Gene

A piece of the DNA that contains the instructions for making a specific protein in the body.7

Immune system

The body's defense system that protects against infections and diseases by identifying and attacking harmful invaders like bacteria, viruses, and abnormal cells.8

Localized treatment

Treatment that is directed to a specific organ or limited area of the body, such as an abnormal growth on the skin.9

Lymph nodes

Small structures that filter out harmful substances and help the body fight infections.10

Lymph vessels

Thin tubes that transport lymph fluid and white blood cells throughout the body to support immune function.11

Lymphatic system

A network of vessels, tissues, and organs that help remove waste and toxins, as well as fight infections in the body.11

Magnetic resonance imaging (MRI)

A scan that uses powerful magnets and radio waves to take detailed pictures of the inside of the body.12

Malignant

A term used to describe cancer. Malignant cells grow uncontrollably, can invade nearby tissues, and may spread to other parts of the body through the bloodstream or lymphatic system.13

Metastasis

The spread of cancer from where it started to another part of the body.14

Metastatic cancer

Cancer that has spread from where it first started to another part of the body.15

Positron emission tomography-computed tomography (PET-CT)

A procedure that combines the pictures from a positron emission tomography (PET) scan and a computed tomography (CT) scan. The combined scans give more detailed pictures of areas inside the body than either scan gives by itself.16

Proximal ES

A type of ES that forms in areas close to the center of the body, such as the chest, abdomen, pelvis, and back. It is less common than distal ES.5,6

Radiotherapy

High-energy rays used to destroy cancer cells and shrink tumors.17

Recurrence

The return of cancer after successful treatment and a period when no cancer could be detected.18

Sarcoma

A type of cancer that starts in the bones or soft tissues of the body, like muscles, fat, cartilage, blood vessels, or other tissues that support or connect parts of the body.19

SMARCB1

A gene that provides instructions for a protein called INI1, which is involved in many processes, including DNA repair, DNA replication, and cell growth, division, and maturation.20 Most cases of ES involve an error or mutation in this gene.5,6

Soft tissue sarcoma

A group of different cancers that form in the soft tissues of the body, like muscles, fat, blood vessels, tendons, nerves, and lymph vessels.21

Systemic treatment

A treatment that circulates through the bloodstream, reaching cells throughout the body.22

Tumor

An abnormal clump of tissue that forms when cells divide and grow out of control or do not die when they naturally should.23

Ulcer

An open sore on the skin that fails to heal normally.24

References
  1. National Cancer Institute. Biopsy. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/biopsy. Accessed February 2025.
  2. National Cancer Institute. Osteosarcoma. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/osteosarcoma. Accessed February 2025.
  3. National Cancer Institute. What is cancer? Available at https://www.cancer.gov/about-cancer/understanding/what-is-cancer. Accessed February 2025.
  4. National Cancer Institute. Computed tomography (CT) scans and cancer. Available at https://www.cancer.gov/about-cancer/diagnosis-staging/ct-scans-fact-sheet#what-is-computed-tomography. Accessed February 2025.
  5. Needs T, Fillman EP. Epithelioid sarcoma. July 2, 2024. Available at https://www.ncbi.nlm.nih.gov/books/NBK532911/. Accessed February 2025.
  6. Czarnecka AM, Sobczuk P, Kostrzanowski M, et al. Epithelioid sarcoma – from genetics to clinical practice. Cancers. 2020;12:2112.
  7. National Cancer Institute. Gene. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/gene. Accessed February 2025.
  8. National Cancer Institute. Immune system. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/immune-system. Accessed February 2025.
  9. National Cancer Institute. Localized therapy. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/localized-therapy. Accessed February 2025.
  10. National Cancer Institute. Lymph node. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/lymph-node. Accessed February 2025.
  11. National Cancer Institute. Lymphatic system. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/lymphatic-system. Accessed February 2025.
  12. National Cancer Institute. Magnetic resonance imaging (MRI). Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/magnetic-resonance-imaging. Accessed February 2025.
  13. National Cancer Institute. Malignant. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/malignant. Accessed February 2025.
  14. National Cancer Institute. Metastasis. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/metastasis. Accessed February 2025.
  15. National Cancer Institute. Metastatic cancer. Available at https://www.cancer.gov/types/metastatic-cancer. Accessed February 2025.
  16. National Cancer Institute. Positron emission tomography-computed tomography. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/positron-emission-tomography-computed-tomography-scan. Accessed February 2025.
  17. National Cancer Institute. Radiotherapy. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/radiotherapy. Accessed February 2025.
  18. National Cancer Institute. Recurrence. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/recurrence. Accessed February 2025.
  19. National Cancer Institute. Sarcoma. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/sarcoma. Accessed February 2025.
  20. MedlinePlus. SMARCB1 gene. Available at https://medlineplus.gov/genetics/gene/smarcb1/. Accessed February 2025.
  21. National Cancer Institute. Soft tissue sarcoma. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/sarcoma. Accessed February 2025.
  22. National Cancer Institute. Systemic therapy Available https://www.cancer.gov/publications/dictionaries/cancer-terms/def/systemic-therapy. Accessed February 2025.
  23. National Cancer Institute. Tumor. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/tumor. Accessed February 2025.
  24. National Cancer Institute. Ulcer. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/ulcer. Accessed February 2025.