Endometrial stromal sarcoma (ESS)

Also known as:

  • ESS
  • Uterine stromal sarcoma

What is endometrial stromal sarcoma?

Endometrial stromal sarcoma (ESS) is a rare type of sarcoma of the uterus or womb that develops from the connective tissue cells of the lining of the womb (endometrium). ESS accounts for less than 1% of all uterine malignancies.

How rare is endometrial stromal sarcoma?

ESS accounts for less than 1% of all womb cancers. The incidence of ESS in the UK and US is relatively low. In the UK, it is estimated that less than 100 women are diagnosed with ESS each year. An incidence rate of 0.15 per 100,000 and is similar in the US.

Who does endometrial stromal sarcoma affect?

ESS can occur at any age but most commonly affects women in their 40s and 50s. There are more premenopausal cases than for other uterine cancers. The exact cause of ESS is unknown, but it has been associated with certain risk factors such as a history of breast cancer, hormonal therapy, and hereditary leiomyomatosis and renal cell carcinoma (HLRCC) syndrome.

Why is RareCan interested in endometrial stromal sarcoma?

RareCan is working to accelerate research into endometrial stromal sarcoma by making it easier for researchers to connect with people who have it. You can help us do this by becoming a RareCan member and sharing information with us about your ESS diagnosis. We will then get in touch with you about any research opportunities that might be suitable for you.

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Useful links

If you are looking for further support with endometrial stromal sarcoma we recommend the following websites:

Sarcoma UK

Sarcoma UK

Sarcoma UK is a charity for those with bone and soft tissue sarcoma diagnoses including endometrial stromal sarcoma. They provide information on all types of sarcomas and have a patient support line to help assist with any queries and worries.