Friday, March 07, 2008

Rare cancer and women (by Suzie)

       Because I know how to have a good time, I’ll be spending a couple of days with more than a thousand gynecologic oncologists.
       At their national conference next week, I’ll be representing the Sarcoma Alliance, trying to lure doctors to my table with little bits of chocolate. I have pamphlets, wristbands and ribbons to foist on them.
       If you don’t have this rare cancer, why should you care? Because problems for women with sarcoma illustrate bigger issues in our health-care system. They expose a glitch in the system.
       When I was diagnosed with vaginal leiomyosarcoma in 2002, some cancer centers told women with gyn sarcoma that they had to see a gyn oncologist. They could not see a doctor in a sarcoma department. Let me restate that: Some women with sarcoma were not allowed to see sarcoma doctors. Hmmm, what’s wrong with that picture?
       In 2006, when I contacted the federal National Cancer Institute, two information specialists said I should see a gyn oncologist, not a doctor in sarcoma.
       The NCI and the private, nonprofit National Comprehensive Cancer Network separate gyn sarcoma from other types of soft-tissue sarcoma on their Web sites. After I asked about this in 2006, NCI linked the sites.
        The NCCN publishes guidelines for doctors. Oncologists who focus on sarcoma write the guidelines on soft-tissue sarcoma. Gyn oncologists write the guidelines for women with gyn sarcomas.
        As far as I know, no one in a sarcoma department has ever gone to the national gyn oncology conference. On next week’s agenda, I didn’t see any discussion of sarcoma. On the flip side, it is rare for someone in gyn to attend the international sarcoma conference. In two major NCI reports on gyn cancer and sarcoma, the doctors don’t mention each other.
         I wrote about this in 2006 here and here.
         I don’t mean to disparage doctors. I like and respect mine. I have no quarrel with a woman who decides that a gyn oncologist is best for her. I see a gyn oncologist as well as a medical oncologist in a sarcoma department. Other women should have the choice of seeing the former, the latter or both.
        I know the medical system could improve in many ways. But the situation with gyn sarcoma illustrates a couple of points: Patients need to know about options and have access to specialists. And doctors need to collaborate more on research and treatment.