Although I found this site very helpful before and after my hysterectomy, I haven't been back for a while. But I did want to provide some helpful information to others who have leiomyosarcoma (LMS) like me. Here are 2 sites that offer good information on the treatment of LMS:
www.acor.org or
www.leiomyosarcoma.info/ .
When I got a birthday card from this site yesterday, I decided to search for all messages mentioning LMS. I was distressed by misinformation or information that does not jive with current recommendations from sarcoma centers.
I started to respond to the threads, but then I saw the recommendation to start a new thread, to get more readers.
LMS is a rare cancer of the smooth muscles. It can be found all over the body, but is common in the uterus.
Statistics indicate that people who go to sarcoma centers live longer. On my list and others, we urge people to see an oncologist who specializes in sarcoma. That would be a doctor who sees at least 100 cases of sarcoma a year. Many gynecologic oncologists see only a few cases of LMS in their careers. We have heard many stories of gyn oncs who don't know the current treatment for LMS.
I see a gyn onc regularly, but I occasionally return to the sarcoma center at MD Anderson in Houston for consultation. The sarcoma onc and the gyn onc communicate with each other.
Surgery with wide margins is the best way to combat LMS, but it is no guarantee that the LMS will not return. Even if the surgeon says he "got it all." My surgeon got all of the cancer he could see, but it still spread to my lung within 6 months.
When I say "wide margins," I mean the surgeons take healthy tissue around the site. When LMS occurs in the reproductive organs, surgeons familiar with LMS would want to take out both the uterus and the ovaries.
In the U.S., sarcoma doctors generally recommend CT scans of the pelvis, abdomen and chest every three months. People who can't afford that may substitute X-rays and ultrasounds.
Often, if LMS is going to recur or spread, it will do so within 2 years. But if you reach that mark, there's no guarantee that it won't come back later.
Different types of cancer are diagnosed, monitored and treated differently. That means that what a doctor does with a uterine LMS patient often will differ from a patient with another form of uterine cancer.
A sarcoma is not the same as a carcinoma.
If a pelvic LMS spreads to another area of the body, such as the lungs or liver, you're considered incurable. Surgery, chemo or radiation may get rid of the cancer, but doctors expect it will return at some point. It may return in a couple of months or not for 10 years.
I hope this post doesn't upset anyone. But having the right information can make a life-and-death difference.
leiomyosarcoma
