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
cancer.”
“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.-- Suzie
Cooper, who lives in Cincinnati, belongs to an online support list for LMS at www.acor.org. 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: http://www.leiomyosarcoma.info/general.htm,
www.lmsdr.org and www.sarcomaalliance.com
2 comments:
Hello, I have a germ cell ovarian tumor. Your blog makes interesting reading.
I was just diagnosed with LMS and after a complete hysterectomy, they now find it has hit my vascular system more so than they had thought originally as well as my lymph nodes. I feel a little in the dark here as I was under the assumption through the surgery and pathology reports,there would be no more info to find. I do have an appt. with dr. tomorrow and will ask how thry found different info and why they want to still do targeted radiation near pelvic where they originally had thought some cells had escaped.
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