Sunday, July 16, 2017

Sarcoma Awareness Month - Add your support

Guest post by patient advocate Suzie Siegel (@SuzieSiegel)

Many women never hear of sarcoma until they get it.

Sarcoma Awareness Month can teach women about rare gynecological cancers — then give them hope and resources to survive.

The National Cancer Institute, the American Society of Clinical Oncology, the American Association for Cancer Research and the American Cancer Society all recognize July as Sarcoma Awareness Month.

But the White House and Congress have never made it official. Once again, sarcoma nonprofits have a petition going, and we would love to have your help. 

Please add your name to the petition to officially designate July as 
Sarcoma Awareness Month: 

Sarcoma is a cancer of muscle, bone and other connective tissues. It represents 20% of childhood cancer cases but only 1% in adults. It can arise anywhere in the body at any age, from newborns on up.

In women, sarcoma can occur anywhere in the reproductive tract although the uterus is the most common. The different types are:
1.     Carcinosarcoma (formerly known as malignant mixed mullerian tumor or MMMT). Sarcoma specialists often don’t consider this a true sarcoma.
2.     Leiomyosarcoma. The Cancer Genome Atlas is expected to separate gynecologic leiomyosarcoma from LMS found elsewhere in the body.
3.     Endometrial stromal sarcoma. It has been divided into low-grade, high-grade and undifferentiated uterine sarcoma.
4.     Adenosarcoma.
5.     Embryonal botryoides or rhabdomyosarcoma found in infants.
6.     PEComa.

Risk factors include previous pelvic radiation and use of Tamoxifen.

Women often are diagnosed first by an OB/GYN and may then be referred to a gynecologic oncologist. Many also choose to see a medical oncologist who specializes in sarcoma, too.

Sarcoma nonprofits can help women find specialists as well as financial and emotional help. Let us help you!

I’m a 15-year survivor of metastatic leiomyosarcoma that started in my vagina and spread to my right lung. I volunteer for the Sarcoma Alliance, Sarcoma Foundation of America, Imerman Angels and MD Anderson Cancer Center’s MyCancerConnection. You can contact me at

Suzie Siegel is pictured here at SGO 2017 with Dr. Don Dizon
at her table for the Sarcoma Foundation of America

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