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Uterine Leiomyosarcoma and Other Smooth Muscle Tumors of the Uterus

Uterine leiomyosarcoma (LMS) is a rare form of cancer of the uterus, where smooth muscle tumors develop in the lining of the uterus. However, the generic term smooth muscle tumor is used to describe both cancerous and non-cancerous tumors of the uterus. Uterine leiomyosarcoma refers to malignant tumors, whereas an example of a benign tumor is a fibroid, also known as uterine myoma (short for leiomyoma).The uterus is the most common site for the development of both cancerous and non-cancerous smooth muscle tumors.

Uterine Leiomyosarcoma Prognosis

Uterine leiomyosarcoma is an extremely uncommon cancer that affects as few as seven adult women in a million. The five-year survival rates for women who are diagnosed in Stage I of the disease is around 50 to 65 percent. If the disease is more advanced at the time of diagnosis, the five-year survival rate for uterine leiomyosarcoma drops to zero to twenty percent. The poor prognosis is largely due to two factors: the high incidence of recurrence and the ease with which the disease can spread to other organs of the body through the blood and lymphatic systems.

Benign Smooth Muscle Tumors of the Uterus

Unlike uterine leiomyosarcoma, which is a rare form of smooth muscle cancer, uterine fibroids are a widespread, non-malignant condition that affects more than thirty percent of women in the Western World. Most fibroids, however, are asymptomatic and require no treatment.

A Common Misconception About the Uterus
In the vast majority of cases, non-cancerous smooth muscle leiomyomas (fibroids) of the uterus do not lead to the development of uterine leiomyosarcoma. Progression to cancerous uterine leiomyosarcoma, from benign smooth muscle leiomyomas, is extremely rare. Fibroids are only removed if they cause problems or impair fertility, not because there is a risk of cancer. Even a woman with a severe case of fibroids is at no greater risk of developing uterine leiomyosarcoma.

Uterine Leiomyosarcoma and Endometrial Adenocarcinoma

Uterine leiomyosarcoma is sometimes confused with the most common type of uterine cancer, called endometrial adenocarcinoma, because both cancers originate within the uterus. The main difference between the two types of cancer is the type of uterine tissue affected. Leiomyosarcoma occurs in the smooth muscle of the uterus called the myometrium, while endometrial adenocarcinoma develops in the lining of the uterus (the endometrium).

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Posted by Starlene Pepper

September 05, 2008 at 06:16 AM

In May of 2007 after two large tumors and smaller ones were removed from the muscle wall of my uterus, the diagnosis came back as leiomyosarcoma. This shocked the doctor because he thought they were fibroids. I went through two surgeries where lympnodes were removed. The cancer had not spread but I still live with the fear that it can come back somewhere else! Other than the surgery there was no other treatment. I was 43 at the time of diagnosis. I just hope since this is a rare type of cancer that I have done all that needs to be done. Thanks for this website, last year after my diagnosis there wasn't much information about leiomyosarcoma at all.

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Posted by Laurie

September 14, 2008 at 08:18 PM

Hi Starlene,
You are the only person I've ever known of besides myself who is diagnosed with LMS. I am also 43 years old, and I'm married and a mother of a 5 year old. My treatment of the cancer was a total hysterectomy and chemo consisting of Taxotere, Gemcitabine, and Adriamycin. The chemotherapy went well for me, and I had minimal side effects. I did lose my hair, but it is growing back now and looks the same as it did before the treatment. If you would like, I'm interested in writing you to see how you are doing and also to get some idea if we have any similarities in our lifestyles that could possibly help answer the question of how we may have gotten this cancer. I know maybe it's a waste of time to question the "hows", but I'm still curious. It's so rare, and I wonder what we may have done that was different from what others have done. Are those questions anything you have wondered also? I hope your cancer was completely removed, and you never have any problems with it again! God bless and remember "You are not alone!". Sincerely, Laurie

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Posted by Laurie

October 30, 2008 at 03:55 PM

Hi Dawn, (sorry, I accidentally posted this to Connie, but I meant to post it for you),
I'm sorry to hear about your diagnosis. Don't give up, though. I know there is not a lot of data out there about this cancer, but you are not alone. My LMS was diagnosed a year ago, and I immediately had a complete hysterectomy. If this is possible for you, I think surgery is one way to fight this. I haven't had any trouble with the hysterectomy, and I'm glad I chose that option. Also, I had chemotherapy to try to get rid of any microscopic cells that could still be in my bloodstream. The chemo agents that were used were (and I will spell these wrong, but your doctor will know about these) Taxotere, Gemcidobene or Gemsar, and Adriomycin. Just two days ago, an oncologist told me that Taxotere and Gemcidobene are the medicines currently being used to treat LMS. I know it's difficult to be diagnosed with something like this and then to have to make choices about treatment. If you would like any other information from me, just ask. I had no physical trouble with those chemo agents, no nausea or fatigue, but I did lose my hair. Hair grows back though. All the best luck to you, and please don't think it is too late for you to have treatment. I met a 93 year old woman who was having treatment for ovarian cancer, and she was doing just fine...she even had her own hair still. I, too, have always been a healthy person, so having a cancer diagnosis was a shock to me and still is. I think that's how a lot of us feel. Just remember, you are not alone in this, and keep the faith that you will be just fine. Make sure you have a doctor who is willing to learn as much as possible about this and give you the care you need. Don't pay attention to scary statistics because statistics cannot predict the outcome of a unique individual. Take care, Laurie

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Posted by Laurie

October 30, 2008 at 03:51 PM

Hi Connie,
I'm sorry to hear about your diagnosis. Don't give up, though. I know there is not a lot of data out there about this cancer, but you are not alone. My LMS was diagnosed a year ago, and I immediately had a complete hysterectomy. If this is possible for you, I think surgery is one way to fight this. I haven't had any trouble with the hysterectomy, and I'm glad I chose that option. Also, I had chemotherapy to try to get rid of any microscopic cells that could still be in my bloodstream. The chemo agents that were used were (and I will spell these wrong, but your doctor will know about these) Taxotere, Gemcidobene or Gemsar, and Adriomycin. I know it's difficult to be diagnosed with something like this and then to have to make choices about treatment. If you would like any other information from me, just ask. I had no physical trouble with those chemo agents, no nausea or fatigue, but I did lose my hair. Hair grows back though. All the best luck to you, and please don't think it is too late for you to have treatment. I met a 93 year old woman who was having treatment for ovarian cancer, and she was doing just fine...she even had her own hair still. I, too, have always been a healthy person, so having a cancer diagnosis was a shock to me and still is. I think that's how a lot of us feel. Just remember, you are not alone in this, and keep the faith that you will be just fine. Make sure you have a doctor who is willing to learn as much as possible about this and give you the care you need. Don't pay attention to scary statistics because statistics cannot predict the outcome of a unique individual. Take care, Laurie

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Posted by Dawn

October 25, 2008 at 09:15 AM

I just was diagnosed yesterday and I'm still kind of numb. I've found absolutely no data on this and I don't live an unusual life style. I had a sonogram that shows a huge mass hiding behind a fiborid. I don't know if it being so big if surgery would be of any benefit. Do you have any suggestions as to where I could go to get the best treatment or if it is virtually too late. I'm 64 years old and until this hit I had been in good health.
Sincerely, Dawn

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Posted by Laurie

September 19, 2008 at 11:23 PM

Hi Connie. Sorry to hear about your sister, and I wish her the very best care. When I was diagnosed, my doctor immediately began helping me find a clinical trial to join. I believe that's one of the best ways to find the most current treatment. Hopefully your sister's doctor will be just as open and helpful when it comes to providing options for treatment. Also, with clinical trials, at least her treatment will help further research into how to treat this type of cancer. The frustrating thing about having a rare cancer is that there is no data out there for doctors to turn to to figure out what type of treatment works. That's why those of us with rare cancers can help by joining trials...to provide research data for future cases. That's my belief, anyway. Good luck to your sister, and God bless you both.

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Posted by connie

September 16, 2008 at 06:10 PM

hi laurie sorry to trouble you but i just found out that my sister has the same cancer she is 44 can u tell me what i could do to help her or naything that i could do please

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Posted by Gary Williams

September 12, 2008 at 12:46 AM

Hi Starlene,
My wife Laurie was diagnosed with LMS last year. We have completed a clinical trial in Tampa a few months ago and have since returned to our home in Kailua HI. Laurie just had her first CT scan and now we are on pins and needles about their concern of the scan. I hope I havent added any unnecessary alarm to your situation but I feel like sharing hope and information. She is 43 also. Take care and God Bless.
Gary

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