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

Friday, May 15, 2009

Spirit of Survival West 2009

Please join the Sarcoma Alliance on June 28th, 2009 in celebrating the 4th annual Spirit of Survival West in San Francisco’s beautiful Golden Gate Park. This is a day dedicated to everyone affected by cancer, and specifically those with sarcoma. It's a day filled with optimism and hope. It's a day where sarcoma patients, friends, families and their caregivers meet, share stories, and bond with supporters like you. It's a day when you know that "You are Not Alone.

There will be a 5k walk and for the more ambitious either a 5k or 10k run.

Learn More

Monday, May 11, 2009

Sarcoma Alliance Attends Oncology Annual Meetings

In early May, I attended the annual meetings of the Oncology Nursing Society and the Association of Oncology Social Work. These meetings provide an important opportunity for the Alliance to let oncology providers learn about our programs and services. They also give us the opportunity to renew long term relationships and bring professionals up to date on our new initiatives and activities. We see all kinds of providers at these meetings. Some only have a few sarcoma patients each year and are very excited to learn that there is an organization that can support them in their care of patients and their families. Similarly, some stop by because a family member or close friend has been diagnosed with sarcoma, and they are excited to find an organization that can help them. Finally, some have very large number of sarcoma patients and ask that we send them a new supply of our brochures.

The meetings also give us an opportunity make or renew relationships with other advocacy organizations. We often decide that our respective clients would be better served by adding links on our websites to each other. For example, we have added links to First Descents ( ) a camp for your adults with cancer and to that empowers young adults affected by cancer.

Finally, we also meet with representatives of pharmaceutical companies to talk about clinical trials for sarcoma. I spoke with Merck who in partnership with Ariad are conducting a worldwide trial on Deforolimus. This phase 3 trial is progressing well with patients still be enrolled. More information can be found at . A detailed update will be available at the American Society for Clinical Oncology’s annual meeting at the end of May in Orlando, Florida. I will have an update in early June.

Arthur Beckert, Executive Director