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How to speak ES A guide to 

helpful terms

About sarcoma

Here you can find more about: 

Types of sarcoma
Sarcoma symptoms
Who to see
Types of sarcoma

What is sarcoma?

Sarcomas are a rare and diverse group of cancers in which malignant cells form in the soft tissues of the body.1-5 

Sarcomas typically start as a lump or bump under the skin and can grow in soft tissues like muscles, fat, blood vessels, tendons, nerves, lymph vessels, or in the bones.1-4 They may not cause pain at first, but can get bigger over time and affect nearby tissues.1,2 Sarcomas can develop almost anywhere in the body but are most common in the arms, legs, or abdomen.1,2,4,5

There are two main kinds of sarcoma:

Layers of soft tissue

Soft tissue sarcoma forms in soft tissues of the body, like muscles, fat, blood vessels, tendons, nerves, and lymph vessels1-4

Line art outline of bones

Bone sarcoma forms in bones6

Sarcoma symptoms

What symptoms may sarcoma cause?

The symptoms of a sarcoma may vary depending on the size and location of the tumor.1,2,7

Sarcoma typically presents as a lump,1,2,7-9 and may be accompanied by some of the symptoms described below: 

Noticeable lump on foot

A noticeable lump that may be felt through the skin1,2,7-9

A deep-seated lump

A deep-seated lump, located deeper in the tissue rather than near the skin 
surface2,8,9

Measuring tape

A lump that is growing, or one that has recently increased in size1,2,7-9

Line art outline of lightning bolt

Pain in or around the lump, especially if it is persistent or worsening1,2,7,8

A lump with an open top

Lumps with open sores (ulcers) on the skin, which can be painful7-9

Line art outline of a weighing scale

Losing weight without trying7 – those with sarcoma may observe weight loss along with a lump.7 If you are concerned about unexplained weight loss without an associated lump, it’s also important to consult your doctor

Line art outline of a head with a low battery sign inside

Unexplained fatigue or feeling very tired10 – those with sarcoma may observe fatigue along with a lump.10 If you are concerned about extreme tiredness without an associated lump, it’s also important to consult your doctor

Noticeable lump on foot

A noticeable lump that may be felt through the skin1,2,7-9

Measuring tape

A lump that is growing, or one that has recently increased in size1,2,7-9

A lump with an open top

Lumps with open sores (ulcers) on the skin, which can be painful7-9

Line art outline of a head with a low battery sign inside

Unexplained fatigue or feeling very tired10 – those with sarcoma may observe fatigue along with a lump.10 If you are concerned about extreme tiredness without an associated lump, it’s also important to consult your doctor

A deep-seated lump

A deep-seated lump, located deeper in the tissue rather than near the skin 
surface2,8,9

Line art outline of lightning bolt

Pain in or around the lump, especially if it is persistent or worsening1,2,7,8

Line art outline of a weighing scale

Losing weight without trying7 – those with sarcoma may observe weight loss along with a lump.7 If you are concerned about unexplained weight loss without an associated lump, it’s also important to consult your doctor

Sarcoma typically appears as a lump, sometimes with other non-specific symptoms.1,2,7–9 It’s important to speak with your doctor if you notice any unusual changes or symptoms. Always talk to your doctor about any symptoms you are experiencing.
Who to see

Who should I speak to if I’m worried?

Start by meeting with your doctor if you're worried about any lumps or have any of the symptoms mentioned above, because timely diagnosis may be crucial.2,11,12 Finding sarcoma early may make a big difference and early detection is key. Early diagnosis may lead to better outcomes as treatment may be much less effective if the sarcoma has spread.2,7,9,11,12

Your doctor will examine you and look at your medical history to decide which tests are needed to find the cause of your symptoms.1,2,9 If needed, they’ll refer you for an appointment with an oncologist or sarcoma specialist for further evaluation.2,3,5

Talk to your doctor
Many health issues have similar symptoms.1,2,7-9 Talk to your doctor to find out what might be causing yours.
Line art outline of a stopwatch
Early care may make a difference.2,9,11,12
Don’t wait – contact your doctor today.

If you’ve been diagnosed with a type of sarcoma called epithelioid sarcoma (ES), click here to learn more about your condition, what you can do about it, and where to find some additional support resources.

You're not alone with ES
References
  1. National Cancer Institute. Soft Tissue Sarcoma Treatment (PDQ®)–Patient Version. Available at https://www.cancer.gov/types/soft-tissue-sarcoma/patient/adult-soft-tissue-treatment-pdq. Accessed February 2025.
  2. Shakya S, Banneyake EL, Cholekho S, et al. Soft tissue sarcoma: clinical recognition and approach to the loneliest cancer. Explor Musculoskeletal Dis. 2024;2:56-68.
  3. von Mehren M, Kane JM, Bui MM, et al. NCCN Guidelines Insights: Soft Tissue Sarcoma, Version 1.2021. J Natl Compr Canc Netw. 2020;18:1604-1612.
  4. Bansal A, Goyal S, Goyal A, et al. WHO classification of soft tissue tumours 2020: an update and simplified approach for radiologists. Eur J Radiol. 2021;143:109937.
  5. National Cancer Institute. Soft Tissue Sarcoma Treatment (PDQ®)–Health Professional Version. Available at https://www.cancer.gov/types/soft-tissue-sarcoma/hp/adult-soft-tissue-treatment-pdq. Accessed February 2025.
  6. National Cancer Institute. Osteosarcoma Treatment (PDQ®)–Patient Version. Available at https://www.cancer.gov/types/bone/patient/osteosarcoma-treatment-pdq#_1. Accessed February 2025.
  7. Czarnecka AM. Epithelioid sarcoma. NOWOTWORY Journal of Oncology. 2023;73(3):154-161.
  8. Czarnecka AM, Sobczuk P, Kostrzanowski M, et al. Epithelioid sarcoma – from genetics to clinical practice. Cancers. 2020;12:2112.
  9. Needs T, Fillman EP. Epithelioid sarcoma. Updated July 2, 2024. Available at https://www.ncbi.nlm.nih.gov/books/NBK532911/. Accessed February 2025.
  10. Barrett L, Elliott E, Voorhaar M, et al. A mixed-methods study to better measure patient-reported pain and fatigue in soft tissue sarcoma. Oncol Ther. 2023;11(1):129-143.
  11. Recommendations from the Epithelioid Sarcoma Collaborative: a white paper. Available at https://www.jons-online.com/issues/2021/september-2021-vol-12-no-9/3914-recommendations-from-the-epithelioid-sarcoma-collaborative-a-white-paper. Accessed February 2025.
  12. Soomers V, Husson O, Young R, et al. The sarcoma diagnostic interval: a systematic review on length, contributing factors and patient outcomes. ESMO Open. 2020;5(1):e000592.
  13. Alves A, Constantinidou A, Thway K, et al. The evolving management of epithelioid sarcoma. Eur J Cancer Care (Engl). 2021;30(6):e13489.
  14. Martin S, Clark SE, Gerrand C, et al. Patients' experiences of a sarcoma diagnosis: a process mapping exercise of diagnostic pathways. Cancers (Basel). 2023;15(15):3946.
  15. Younger E, Husson O, Bennister L, et al. Age-related sarcoma patient experience: results from a national survey in England. BMC Cancer. 2018;18(1):991.
  16. de Visscher SA, van Ginkel RJ, Wobbes T, et al. Epithelioid sarcoma: still an only surgically curable disease. Cancer. 2006;107(3):606-612.
  17. Halling AC, Wollan PC, Pritchard DJ, et al. Epithelioid sarcoma: a clinicopathologic review of 55 cases. Mayo Clin Proc. 1996;71(7):636-642.
  18. National Cancer Institute. Recurrence. Available at https://www.cancer.gov/search/results?swKeyword=recurrence. Accessed February 2025.
  19. National Cancer Institute. Metastatic cancer: when cancer spreads. Available at https://www.cancer.gov/types/metastatic-cancer. Accessed February 2025.
  20. Null M, Arbor TC, Agarwal M. Anatomy, lymphatic system. Updated March 6, 2023. Available at https://www.ncbi.nlm.nih.gov/books/NBK513247/. Accessed February 2025.
  21. National Cancer Institute. Localized therapy. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/localized-therapy#. Accessed February 2025.
  22. National Cancer Institute. Systemic therapy. Available at https://www.cancer.gov/publications/dictionaries/cancer-terms/def/systemic-therapy. Accessed February 2025.

How to speak ES A guide to 

helpful terms

Cross icon 

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.