Where can I learn more about epithelioid sarcoma (ES)?
Some helpful resources to support your ES journey
Finding the right support can help you feel less alone. Talking to people who understand what you’re going through can help you feel seen, heard, and supported along the way.
Follow the links below to learn more about independent patient advocacy organizations for epithelioid sarcoma (ES) and other sarcomas, as well as find some helpful resources to start building your support circle.
These resources are included as a reference for patients and do not represent a comprehensive list of resources or advocacy groups for people with ES. Ipsen is not affiliated with and does not endorse any particular advocacy group. We make no guarantees about the accuracy of the information provided on these websites or the quality of support provided.
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
- National Cancer Institute. Biopsy. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/biopsy. Accessed February 2025.
- National Cancer Institute. Osteosarcoma. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/osteosarcoma. Accessed February 2025.
- National Cancer Institute. What is cancer? Available at https://www.cancer.gov/about-cancer/understanding/what-is-cancer. Accessed February 2025.
- 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.
- Needs T, Fillman EP. Epithelioid sarcoma. July 2, 2024. Available at https://www.ncbi.nlm.nih.gov/books/NBK532911/. Accessed February 2025.
- Czarnecka AM, Sobczuk P, Kostrzanowski M, et al. Epithelioid sarcoma – from genetics to clinical practice. Cancers. 2020;12:2112.
- National Cancer Institute. Gene. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/gene. Accessed February 2025.
- National Cancer Institute. Immune system. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/immune-system. Accessed February 2025.
- National Cancer Institute. Localized therapy. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/localized-therapy. Accessed February 2025.
- National Cancer Institute. Lymph node. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/lymph-node. Accessed February 2025.
- National Cancer Institute. Lymphatic system. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/lymphatic-system. Accessed February 2025.
- National Cancer Institute. Magnetic resonance imaging (MRI). Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/magnetic-resonance-imaging. Accessed February 2025.
- National Cancer Institute. Malignant. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/malignant. Accessed February 2025.
- National Cancer Institute. Metastasis. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/metastasis. Accessed February 2025.
- National Cancer Institute. Metastatic cancer. Available at https://www.cancer.gov/types/metastatic-cancer. Accessed February 2025.
- 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.
- National Cancer Institute. Radiotherapy. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/radiotherapy. Accessed February 2025.
- National Cancer Institute. Recurrence. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/recurrence. Accessed February 2025.
- National Cancer Institute. Sarcoma. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/sarcoma. Accessed February 2025.
- MedlinePlus. SMARCB1 gene. Available at https://medlineplus.gov/genetics/gene/smarcb1/. Accessed February 2025.
- National Cancer Institute. Soft tissue sarcoma. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/sarcoma. Accessed February 2025.
- National Cancer Institute. Systemic therapy Available https://www.cancer.gov/publications/dictionaries/cancer-terms/def/systemic-therapy. Accessed February 2025.
- National Cancer Institute. Tumor. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/tumor. Accessed February 2025.
- National Cancer Institute. Ulcer. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/ulcer. Accessed February 2025.