Saturday, October 11, 2008

A different kind of ovarian cancer

          My call for blog links brought a reply from Sharon Leming, who has ovarian leiomyosarcoma. She writes with such eloquence in My Life With Cancer. Here's an excerpt: 
Once in a while, I indulge in the fantasy of what my life would be like if one day, one glorious day, the cancer was gone and I could lay claim to my life again. I dream of the things I could do, of the the good I would do for the world, of the things I have lost that might be regained. I picture myself working, volunteering, driving, swimming, walking. It's a lovely, happy journey -- not a self-pitying one as it might seem, but one that is full of the unfettered hope of a child, the innocent belief that anything is possible. But then of course I am not a child, and I cannot waste a lot of precious time on pie-in-the-sky thinking. It's time to gird myself up for battle again, and to concentrate on finding peace WITHIN the battle rather than dreaming of life beyond it. 
          Women with ovarian cancers, both carcinomas and sarcomas, have been on my mind this week. A friend died of ovarian carcinoma Monday. The next day, I got a call from the M.D. Anderson Network, asking if I'd be willing to speak to a woman with ovarian leiomyosarcoma. (I volunteer for MDA's Patient & Caregiver Support Line as well as the Sarcoma Alliance's Peer-to-Peer Network.)
          This spring, I wrote a short article for "CONVERSATIONS: The International Newsletter for Those Fighting Ovarian Cancer." 
       Yvonne Cooper had cancer in an ovary, but she doesn’t call it “ovarian
       “I consider my cancer to be leiomyosarcoma of ovarian origin,” she said, referring to a rare cancer that resembles smooth-muscle cells. Leiomyosarcoma (LMS) can arise almost anywhere in the body. In the reproductive tract, LMS is much more likely to occur in the uterus. 
       “There are some women with ovarian sarcomas who feel like they get left out,” said Dr. Kian Behbakht, a gynecologic oncologist and associate professor at the University of Colorado at Denver. They may have friends with ovarian carcinoma, or they may know women with uterine LMS. He said the Internet can connect women with rare cancers.
       Cooper, who lives in Cincinnati, belongs to an online support list for LMS at She was diagnosed in 2003 and has had three recurrences. She has had surgeries and chemotherapy and taken anti-angiogenic drugs.
       When treating someone with ovarian LMS, a doctor may look at the literature on uterine LMS or sarcoma in general, said Dr. Matthew Anderson, director of gynecologic oncology at Baylor College of Medicine in Houston. “It’s so rare that you have to generalize.”
       He’s confident that all gyn oncologists would know that LMS might need to be treated differently from an epithelial ovarian cancer. For example, the chemo Adriamycin is commonly used with LMS, he said, but not with epithelial ovarian cancer.
       “Because LMS is so rare,” Cooper said, “it is important to do some research and/or go to a sarcoma specialist to know what one's options are in getting appropriate treatment.”
        She recommends these Web sites:, and
          -- Suzie

Emory touts its sarcoma program

      I got my glossy Emory/Winship magazine in the mail and was delighted to see an article on Dr. Gina D'Amato becoming the director of the sarcoma medical oncology program at the cancer center in Atlanta. 
       Dr. D'Amato talked about her goal of opening multiple clinical trials. She also has helped start a sarcoma support group. 
       The Sarcoma Alliance's main Web site has information on sarcoma centers as well as support groups. 
       -- Suzie

Calling all bloggers!

      Do any of you blog about your experiences with sarcoma? If so, please give us your link -- and consider linking to us. Let's support each other! -- Suzie

Speaking freely on Blogtalk radio

         This is Suzie. I just spoke about sarcoma on Magda Santos' program at You can access our conversation at that site. I was supposed to talk about "Cancer, Love and Sex," but the facts about sarcoma were so shocking that we never got past that. 
         I hope others will find ways to talk about sarcoma. You never know who you will reach.

Tuesday, October 7, 2008

National Cancer Institute - Personalized Oncology

A great way to keep up with the latest in cancer research is to add yourself to the email list for the National Cancer Institute's Cancer Bulletin. The August 19 issues has an excellent overview on personalize oncology.

You can also subscribe to the bulletin at the above link.

Sunday, October 5, 2008

Greetings from Suzie

This is my first post on this blog, and I'm happy to be able to give you all a flower - a hearty sunflower shot by David Lubin, M.D.