Friday, April 25, 2008

Gyn cancer, with an analogy to feminist politics (by Suzie)

      I missed the first National Gynecologic Cancer Awareness Symposium and Gala last Friday, and so, apparently, did the media.* Congress has mandated a public awareness campaign about gyn cancers, but the media will not be bossed.
     “You cannot make us write about women and cancer unless we can illustrate the story with a young, thin, naked, pretty white woman coyly covering her naughty bits while looking anywhere but into the camera,” the media yells from the ramparts.
     “Give me a celebrity or give me death … or better yet, a dead celebrity!” the media shouts. “Or, at least, an inspiring individual whose story we can tell without doing any real research.”
      I don’t mean to sound righteous. I didn’t care much about this topic until I got diagnosed with gyn sarcoma. When I went to Web sites on “women’s cancer” or “gyn cancer,” I found few included sarcoma.
      I know oodles of women with gyn sarcoma. We allegedly represent only a teeny-tiny fraction of gyn cancer, but some sarcoma doctors think sarcomas are undercounted. (For those interested in statistics: A lot of health-care professionals will use the diagnostic code for "uterine cancer," for example, when a woman has endometrial stromal sarcoma, carcinosarcoma or uterine leiomyosarcoma. Later, statisticians may translate "uterine carcer" into endometrial carcinoma, the most prevalent kind of uterine cancer.) 
       Last year, Bush signed Johanna’s Law: The Gynecologic Cancer Education and Awareness Act, which mandates a federal campaign to educate the public. In response, the Centers for Disease Control and Prevention launched Inside Knowledge: Get the Facts About Gynecologic Cancer. There’s no mention of sarcoma.
       More examples: On my behalf, friends donated to a program that funds research for "gynecologic cancer." But I found out nothing went to sarcoma research. At least the coordinators let me switch my friends' donations to sarcoma. The American Cancer Society focuses on major cancers, and has given little or no money to sarcoma research. The ACS doesn't mention that, of course, when seeking donations from sarcoma patients.
        I get angry at these exclusions and want to yell, “Ain’t I a Woman?” How can people address gyn cancer without mentioning women like me? Official information that excludes sarcoma makes it that much harder for women with sarcoma to get the proper medical treatment or find support. Women with other types of cancer don’t have to fight my battles, but if they speak about "women's cancers" or "gyn cancer," I wish they would acknowledge my existence.
        On the other hand, I realize there may be women with even rarer forms of cancer that I’m failing to acknowledge in my work. We can never speak for everyone.
         Even when advocates fail to mention sarcoma, their work may benefit sarcoma patients. For example, women with ovarian carcinoma have made it more acceptable to discuss gyn cancers in general. Techniques for genetic analysis of ovarian carcinoma are now being used to analyze sarcoma. Aromatase inhibitors given to breast-cancer patients now are given to some women with sarcoma, notably endometrial stromal sarcoma.
          Last month, I wrote about plans to attend the annual meeting of the Society of Gyn Oncologists. I stalked doctors with chocolate in one hand and brochures in the other. I was thrilled that some doctors sought information on sarcoma advocacy, including the director of Gynecologic Surgical Services for the National Cancer Institute, who invited the Sarcoma Alliance to attend the national awareness day. I hope to go next year.
          In the meantime, I’ll look for a thrift-store cocktail dress and figure out ways to work with other women.
*If you saw an article, please let me know. I could find nothing on the Internet.