Leiomyosarcoma
Ever heard of it? Can you pronounce it?
This is the name of the cancer that my mom has been surviving for the past 4+ years. It's become a regular part of our family vocabulary. Since her initial diagnosis in 2003, she (and the rest of us) have weathered a few recurrences. This time, the stakes are a bit higher with potentially major surgery to remove a significant portion of her liver on the horizon. We'll know more after next Tuesday when she meets again with her oncologist. In the mean time, we're hoping and praying for the best!
To learn more about Leiomyosarcoma, click here. To sign a petition asking the President to make April 26th "National Leiomyosarcoma Awareness Day," click here.
Finally, here's a recent news story of a women's daring surgery to address her own Leiomyosarcoma. Rare coverage for a rare disease...
Breakthrough Cancer Surgery Saves Terminal Patient
By JEFFERY KOFMAN and ROGER FORTUNA
March 25, 2008
A Florida woman with a golf ball-size tumor in her abdomen who risked a cutting-edge surgery to save her life is now on her way to a full recovery.
Brooke Zepp, 63, was told that her tumor was inoperable because it was buried so deep inside her abdomen and that she had only months to live.
After receiving a diagnosis of leiomyosarcoma, a rare cancer in her abdomen, Zepp had tried radiation and chemotherapy but neither had worked.
Desperate for help, Zepp found a team of surgeons willing to perform an unprecedented operation. The tumor was buried underneath half a dozen major organs.
"I wanted to prove that there is hardly any such thing as inoperable cancer," Zepp said.
It took seven surgeons more than 15 hours, in which they removed her stomach, pancreas, spleen, liver and large and small intestines, while keeping Zepp alive. Once they cut out the tumor, which was wrapped around a major artery, they painstakenly put all the organs back in her body.
In other words, it was like taking the engine out of a car to repair it while the car is still running.
"This is definitely one of the most difficult surger[ies] that we've ever done," said Dr. Tom Kato, who led the team of surgeons that operated on Zepp at the University of Miami Jackson Memorial Hospital.
Zepp's organs were outside of her body for approximately 90 minutes, during which time they were kept refrigerated.
Zepp says she never believed her tumor was going to kill her.
"For anybody out there that is being told that they have cancer that can't be operated on, keep looking, keep looking," said Zepp. "I am an all or nothing kind of person. I want a real life. … I don't want to live a half of a life and I feel free now."
Doctors are releasing Zepp from the hospital in Miami today and believe she is now free of cancer.