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Endometrial Stromal Sarcoma Resources (ESS)

Welcome! I created this page of comprehensive endometrial stromal sarcoma resources to serve as a one-stop-shop for women newly diagnosed with ESS and/or their caregivers. As it is a very rare disease, there is not a lot of information available, and searching for updated and helpful content can be a struggle. If you are aware of additional resources that could be helpful, please feel free to contact me.

Fast Facts

The cause of endometrial cancer is unknown. What IS known is that something occurs to create changes (mutations) in the DNA of cells in the endometrium — the lining of the uterus. The mutation turns normal, healthy cells into abnormal cells. Healthy cells grow and multiply at a set rate, eventually dying at a set time. Abnormal cells grow and multiply out of control, and they don’t die at a set time. The accumulating abnormal cells form a mass (tumor). Cancer cells invade nearby tissues and can separate from an initial tumor to spread elsewhere in the body (metastasize). – Source: Mayo Clinic

ESS tumors start in the supporting connective tissue (stroma) of the lining of the uterus (the endometrium). These cancers are rare. If the tumor is low grade, the cancer cells do not look very different from normal cells and the tumor tends to grow slowly. – Source: Cancer.org

Cancer.org offers a general overview of uterine sarcomas, including ESS, HERE. It includes information on:

  • causes, risk factors & prevention
  • early detection, diagnosis & staging
  • treatment
  • after treatment

This page gives a good explanation of how ESS differs from typical uterine cancer.

Per the CDC, there were 1790 uterine sarcomas diagnosed in 2015 (most recent data available). This represents 3% of the 53,911 total uterine cancers that year. Endometrial Stromal Sarcoma represents an even smaller group within the sarcoma category. See table below.

Number of Invasive Uterine Cancer Cases (2015) — United States

# of Cases%
Overall Incidence53,911100
Endometrioid carcinoma36,42568
Other carcinoma12,67624
Carcinosarcoma2,7145
Sarcoma1,7903
Source: CDC.gov

Patient Guidelines & Treatment Protocols

The National Comprehensive Cancer Network provides some useful downloadable guidelines for cancer patients. If the links below don’t work, the guideline may have been updated. Please go to the main Guidelines page to search for the newest version.

Endometrial Stromal Sarcoma Resources

Support Groups

  • Endometrial Stromal Sarcoma FB Group: Open to ESS patients & their caregivers.
  • Endometrial Stromal Sarcoma Support Group and website. This site is affiliated with the FB group above and contains message boards and additional resources.
  • Sarcoma Alliance FB Group and Website. For information on all sarcomas including ESS.
  • Triage Cancer. This site offers emotional support for patients and caregivers as well as education regarding the practical and legal issues that may arise with a cancer diagnosis. It includes helpful quick guides, webinars, and more.
  • The War on Cancer app provides a mobile tool for emotional support, a method for connecting with others effected by cancer, finding clinical trials, etc.

Additionally, many local cancer support centers offer individual counseling and an array of resources. I recommend a web search on “cancer support center near me”.

Sources for Second Opinions

When dealing with rare cancers, second opinions can be very useful, particularly if you live in a rural area where physicians may not have a lot of access to more unusual cases.

This site has a very useful listing of physicians worldwide that specialize in ESS. You can search by location and physicians are rated by level of expertise:

  • Elite: Global leaders in the field, work with cutting edge treatments, participate in clinical trials, strong research portfolio and speak at conferences.
  • Distinguished: Regional leaders in the field, work with cutting edge treatments, strong research portfolio.
  • Advanced: Excellent at diagnosing & treating patients, extensive experience in the field.
  • Experienced: Experienced in diagnosing and treating conditions.

Most recommended programs have specialty sarcoma centers. Look for an oncologist with a background in ESS and in treating your specific variation of cancer.

The top sarcoma hospitals in the U.S. are currently:

The Sarcoma Foundation of America may offer suggestions. Because ESS is designated as a rare condition, refer to the specialist resources listed at the National Cancer Institute’s (NCI) website.

Source: Leiomyosarcoma Hospitals – State by State Guide

Lastly, Johns Hopkins Center for Rare Gynecologic Cancers – Baltimore, MD offers a center dedicated to rare gynecologic cancers.

Prognosis

Prognosis can be a very scary thing for patients and caregivers to read about. With that in mind, please read the section below titled “Understanding the Numbers” and remember:

  • Treatments improve over time, and the numbers below are based on people who were diagnosed and treated at least five years earlier.
  • The use of morcellation (removing tissue laproscopically by cutting it into small pieces) is used much less frequently now, which will likely lead to fewer recurrances and better outcomes.

The information below is from Cancer.org and is updated periodically.

Survival Rates for Uterine Sarcoma

Survival rates can give you an idea of what percentage of people with the same type and stage of cancer are still alive a certain amount of time (usually 5 years) after they were diagnosed. They can’t tell you how long you will live, but they may help give you a better understanding of how likely it is that your treatment will be successful.

Keep in mind that survival rates are estimates and are often based on previous outcomes of large numbers of people who had a specific type of cancer, but they can’t predict what will happen in any particular person’s case. These statistics can be confusing and may lead you to have more questions. Talk with your doctor about how these numbers may apply to you, as he or she is familiar with your situation.

What is a 5-year relative survival rate?

relative survival rate compares people with the same type and stage of uterine sarcoma to people in the overall population. For example, if the 5-year relative survival rate for a specific stage of uterine sarcoma is 90%, it means that people who have that cancer are, on average, about 90% as likely as people who don’t have that cancer to live for at least 5 years after being diagnosed.

Where do these numbers come from?

The American Cancer Society relies on information from the SEER* database, maintained by the National Cancer Institute (NCI), to provide survival statistics for different types of cancer.

The SEER database tracks 5-year relative survival rates for uterine sarcoma in the United States, based on how far the cancer has spread. The SEER database, however, does not group cancers by FIGO or AJCC TNM stages (stage 1, stage 2, stage 3, etc.). Instead, it groups cancers into localized, regional, and distant stages:

  • Localized: There is no sign the cancer has spread outside of the uterus.
  • Regional: The cancer has spread outside the uterus to nearby structures or lymph nodes.
  • Distant: The cancer has spread to distant parts of the body such as the lungs, liver, or bones.
5-year relative survival rates for uterine sarcoma

(These numbers are based on women diagnosed with uterine sarcoma between 2010 and 2016.)

Leiomyosarcoma

SEER Stage5-Year Relative Survival Rate
Localized66%
Regional34%
Distant13%
All SEER stages combined41%

Undifferentiated sarcoma

SEER Stage5-Year Relative Survival Rate
Localized66%
Regional39%
Distant21%
All SEER stages combined43%

Endometrial stromal sarcoma*

SEER Stage5-Year Relative Survival Rate
Localized99%
Regional92%
Distant76%
All SEER stages combined95%

*The outlook for high-grade ESS tends to be worse than for low-grade ESS, and is more likely to be similar to that for undifferentiated sarcoma (see table above).

Understanding the numbers
  • These numbers apply only to the stage of the cancer when it is first diagnosed. They do not apply later on if the cancer grows, spreads, or comes back after treatment.
  • These numbers don’t take everything into account. Survival rates are grouped based on how far the cancer has spread, but your age, overall health, tumor grade, tumor type, how well the cancer responds to treatment, and other factors can also affect your outlook.
  • People now being diagnosed with uterine sarcoma may have a better outlook than these numbers show. Treatments improve over time, and these numbers are based on people who were diagnosed and treated at least five years earlier.

*SEER= Surveillance, Epidemiology, and End Results

NIH Outcomes by Stage

The 5-year overall survival (OS) rate for stage I patients is >90%, while that of patients in stages III and IV is 50%. However, patients with HG-ESS experience earlier and more frequent recurrences (often <1 year) and are at a higher risk of death due to the disease. Source: NIH.gov, Jan 17, 2019

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