Saturday, May 23, 2009

Sarcoma & women's oncology

This is a photo of Gia and Genine Apidone, wearing the puzzled expression of someone who might not actually know what sarcoma is. Genine is a counselor at Case Western Reserve University in Cleveland. She and I have master's degrees in women's studies, and we were in classes together that looked at women in the health-care system, among other things.
         I was thinking of that this month when I went to a reception for the new Center for Women’s Oncology at the Moffitt Cancer Center in Tampa. The center combines the clinics for breast and gynecologic cancers.
         I'd love to hear from women with sarcoma in other locations -- do you ever think: Hey, I'm a woman, too!
         At the reception, I wore a pink suit because it was pretty, forgetting my own "gang colors."  Because my cancer arose in my reproductive tract, people told me that I should have worn teal, the color for ovarian cancer, which seems to have morphed into the color for all gyn cancers. (I could have worn purple for leiomyosarcoma or yellow for sarcoma.)
         There was live music, gourmet hors d’oeuvres and an open bar. One doctor joked that patients might not mind the usual wait time if the waiting room could retain the bar. Survivors were given a white rose and a tote bag. 
          We won’t keep the bar, but there’s no doubt that women whose cancers arose in their reproductive tracts will get an upgrade in amenities by the merger with the breast clinic. Many women have worked hard to raise money to fight breast cancer. I have great respect for them. In a system that relies heavily on volunteers and donations, however, people with rare diseases get less.
           As an example: In the new center, plush bathrobes in a light sage, tied with a ribbon, rested on the exam tables. I asked if those were the gifts we could win in the drawing. No, I was told, patients would be wearing them. WHAT?? We don't have to wear stiff paper drapes or white-with-small-flowers-and-washed-a-zillion-times-in-hot-water gowns?
           Combining the breast and gyn clinics can increase collaboration among doctors in the clinic and the labs. I'm all for collaboration -- I wish oncologists in gyn and sarcoma would collaborate nationwide.
            There’s a genetic link between some breast and ovarian cancer. For the women with that genetic profile, it makes sense to join forces. But there are other cancers connected by genetics or treatment, e.g., retinoblastoma and soft-tissue sarcomas. I hope all oncologists and support staff understand the various connections.
             -- Suzie Siegel

1 comment:

Noadiah Malott said...

I have Liposarcoma of the right thigh. I have been in support group chats where no one was aware of what sarcoma was. I know the devastation of breast cancer or gyn cancers, but women get other cancers that can be just as devastating. We need as much support for our cancer as other cancer victims and survivors.

Noadiah Malott, IN