What’s New in Leiomyosarcoma?

By Julie Grisham,

Thursday, July 14, 2016

Uterine sarcoma expert Martee Hensley cares for people with leiomyosarcoma and other uterine cancers.

Memorial Sloan Kettering has a team of experts who specialize in the diagnosis and treatment of uterine sarcomas. Here, medical oncologist Martee Hensley tells us the latest developments in leiomyosarcoma and how our team approach benefits people with these rare cancers.

  • Uterine sarcomas are rare, making up only 4% of all uterine cancers.
  • There are many types of uterine sarcoma, and they vary in their prognosis and treatment.
  • MSK pathologists are experts at diagnosis.
  • Many treatments are available, depending on the type and stage of disease.

Uterine sarcomas are quite rare, accounting for less than 4% of uterine cancers, which grow in the uterus. About 1,200 women in the United States each year are diagnosed with a type of uterine sarcoma, which includes leiomyosarcoma.

Memorial Sloan Kettering medical oncologist Martee Hensley specializes in the diagnosis and treatment of uterine sarcomas and other gynecologic cancers. We spoke with her recently about the importance of a proper diagnosis and about how treatments are improving the lives of women living with this disease.

How do leiomyosarcomas and other uterine sarcomas differ from other types of uterine cancer?

Uterine sarcomas arise in the muscle or connective tissues of the uterus, whereas the more common type of uterine cancer, called endometrial carcinoma, starts in the lining of the uterus. These two types of cancer have different systems of staging and different treatment approaches. Some high-grade uterine sarcomas can be much harder to treat than endometrial carcinomas and have lower survival rates, even when the disease is caught early.

There are several different types of uterine sarcomas, which vary in their behavior, prognosis, and treatment. The most common type is leiomyosarcoma. Other types include carcinosarcoma, adenosarcoma, low-grade endometrial stromal sarcoma, and high-grade endometrial stromal sarcoma. In addition to being very different from endometrial carcinoma, these sarcoma types are very different from each other. Each has its own method of treatment. For example, some of these tumors may be hormone-sensitive whereas others are not.

Because these tumors can be difficult to diagnose correctly, and because their management strategies can be very complicated, it’s important that women who have them are treated at a center like MSK, which has extensive experience in diagnosing and treating them.

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Could you explain more about why proper diagnosis is so important?

It’s vital to have pathologists who are experts in sarcoma review the pathology slides. At MSK we are fortunate to have those specialists. I work with them closely to understand the specific type of uterine sarcoma each of my patients has.

Our pathologists are experienced in recognizing the fine distinctions of every tumor. This gives us a better understanding of the potential behavior of each patient’s cancer, helps us estimate the risk that the tumor may come back after surgery, and helps us determine the optimal treatment strategy. 

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What are the symptoms of uterine sarcoma?

For all uterine cancers, not just sarcoma, symptoms may include abnormal bleeding or unusual discharge from the vagina between menstrual periods or after menopause. Other symptoms can include pain, an unusual feeling of fullness in the pelvic area, and frequent urination. 

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Are there any risk factors for leiomyosarcoma and other uterine sarcomas?

Uterine sarcomas are very rare diseases. Most women who develop these cancers do not have any identifiable risk factors for sarcoma. Women who are survivors of childhood cancers and who were treated with radiation are at increased risk for developing sarcomas as adults, including uterine sarcomas. But those women are a small minority of cases.

Most women who get this disease develop it in their early to mid-50s, but there is a broad range of ages at which they are diagnosed.

While leiomyosarcomas develop commonly in the muscle wall of the uterus, they can also develop in both men and women in other organs or tissues that have smooth muscle cells.

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How is uterine sarcoma treated?

The most common treatment is surgery, especially when the disease is diagnosed at an early stage and has not spread beyond the pelvis. At a minimum, women need a hysterectomy — removal of the uterus — but may require more extensive surgery depending on how far the cancer has spread.

Uterine sarcoma can metastasize to other parts of the body, most commonly to the lungs. For women who develop metastatic disease, we consider a number of different approaches. If a patient has an isolated metastasis, like a single tumor in the lung or the liver, we can often remove it with surgery or treat it with an interventional radiology approach, such as ablation. The decision about the best approach is very nuanced. For that reason it’s important to consult with a doctor who has experience treating metastatic sarcomas.

Uterine Sarcoma Experts
From diagnosis to surgery and other forms of treatment, women with uterine sarcoma are best cared for by a team of specialists familiar with this rare condition. Find out why.
Learn more

For patients whose disease is more widespread, there are a number of different effective chemotherapy regimens that are good at controlling the disease. When one stops working, we usually have other options that we can try.  MSK sarcoma physicians are leaders in the development of new treatment approaches for uterine sarcoma and other sarcomas.

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What are some of the challenges of treating leiomyosarcoma and uterine sarcomas?

It may be difficult to know whether a uterine mass is a sarcoma or not. There are no diagnostic imaging techniques that can reliably distinguish between a uterine sarcoma and a benign uterine growth such as a leiomyoma [fibroid] or a low-grade pathology such as STUMP [smooth muscle tumor of uncertain malignant potential]. For this reason, it’s a good idea for women with abnormal uterine findings to consult with a gynecologic oncologist for proper planning of their surgery.

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Why did you choose to work on uterine sarcomas at Memorial Sloan Kettering?

I feel privileged to care for women who are facing these rare and complex cancers.  It is highly satisfying to help patients understand their disease each step of the way, and to help them make the best treatment choices. Doing this work at MSK means that I am fortunate to work with a deeply experienced team of sarcoma-dedicated specialists representing all aspects of care — pathologists, surgeons, radiation oncologists, medical oncologists, radiologists, and nurses. Our collective skills and experience in the diagnosis and treatment of these rare tumors give us the ability to choose the best treatment for each patient that fits the behavior of that patient’s specific sarcoma.

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This is an excellent overview from a renowned specialist. But I'm curious about the inclusion of carcinosarcoma. I thought that was no longer considered a "true" sarcoma.

Suzie, thank you for your comment. We sent your question to Dr. Hensley, who responded, "Carcinosarcomas are cancers that nearly always arise in the gynecologic organ (Mullerian) tract. They have a biphasic appearance with part of the tumor looking like endometrial carcinoma and part looking like sarcoma. The sarcoma portion can look like a number of different types of sarcoma, including sarcomas that would not be expected in the uterus, such as chondrosarcoma. Currently, we consider that carcinosarcomas differ enough from endometrial carcinoma in terms of disease behavior and prognosis that we strive to study them separately. They also differ from leiomyosarcoma (LMS) and thus are not generally included in LMS studies. Like gynecologic carcinomas and gynecologic sarcomas, carcinosarcomas are rare tumors that are best managed by physicians who are clinical experts in gynecologic malignancies."

As a daughter, of a mother who had leiomyosarcoma, I am interested to know if any link has been found to leiomyosarcoma and heredity. I know it worried my mom that she might pass this down to her daughters/granddaughters. Thank you

What treatments do you recommend for leiomyosarcoma in the liver. Treatments so far, each for at least 3 cycles: Gemcitabine, Gemcitabine + Gemcitabine, DOXOrubicin, Trabectdin, Votrient. Tumors have increased in size and number.
Thank you.

Yehuda, thank you for reaching out. We are unable to make specific medical recommendations, but there is currently one clinical trial for leiomyosarcoma at Memorial Sloan Kettering:


If you would like to make an appointment with a Memorial Sloan Kettering physician, please call our Physician Referral Service at
800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment

Thanks for your comment.

So little time so much to do. How does one get accepted into a clinical trial? Because time is of the essence and it is flying...I am curious what criteria is needed for acceptance. Will the first consultation with the physician and all clinical reports available provide an answer? Thank you for all you do.

Dear Christine, every clinical trial has a particular protocol and its own unique set of eligibility requirements. If you are interested in browsing through our open clinical trials, please visit https://www.mskcc.org/cancer-care/clinical-trials where you can search for specific studies using keywords or by disease of interest. You can also learn more about how to decide if a clinical trials is right for you and other helpful information there as well.

If you are interested in a joining a particular study, have questions about any of our trials, or would like to make an appointment with one of our specialists to discuss your treatment options, please call our Physician Referral Service at 800-525-2225. Thank you for reaching out to us.

I HAVE leoiomyosarcoma tumor in my stomach that metastise to my liver and maybe in bones of the pelvis I am looking for treatment .There is a checkpoint study in Seattle opens two weeks .Or should I come to your MSK

Should all uterine sarcoma patients request estrogen and progesterone receptor testing on their tumors? And if positive, which aromatase inhibitors should be tried?

My sister in law was diagnosed in January 2016 with LMS, she is also an insulin dependent diabetic. She underwent Chemotherapy and went into remission. She was clear in PET scan in September and CT scan in December revealed a tumor again and small tumors on the fatty tissue around her intestines and her belly filling with fluid. They have basically told her to look at her quality of life rather than quantity. It is sad to think that this is it. Basically go home and die. I just wish we had found Memorial Sloan sooner, maybe we could have consulted before now, when we feel helpless and with no hope.

Dear Veronica, we are sorry to hear about your sister-in-law's diagnoses.

Coping with advanced cancer is difficult for both patients and caregivers. You and your sister-in-law may find some of this information in this article helpful:
Living and Coping with Advanced Cancer

Our online community for patients and caregivers is also a good resource to connect with and get support from others who are having similar experiences. To learn more and sign up, please visit https://www.mskcc.org/experience/patient-support/counseling/groups/conn…

Thank you for sharing your thoughts and experience on our blog.

Hi i am preeti from India. I am fighting with metastatic leiomyosarcoma. I have taken chemo MIA, halaven with DTIC,Votrient and now on Yondelis.
Each treatment showed good response for 3 to 4 cycles but after that disease progressed. I am tensed now what next after Yondelis.
Please reply.

Dear Preeti, we are sorry to hear about your diagnosis. If you would like to make arrangements to have one of our specialists conduct a medical records review for you by mail, or make an in-person appointment to consult with one of our physicians about possible next steps in your care, please contact our International Center at international@mskcc.org. To learn more about the services we offer for patients who live outside of the United States, please visit https://www.mskcc.org/experience/become-patient/international-patients. Thank you for reaching out to us.

To clarify: if one has had abdominal and transvaginal ultrasounds that show multiple leiomyomas (intramural, submucosal, and subserosal) and thus the endometrium could not be reliably measured, then there is no way to tell if there is some kind of cancer present? Should I see a general gyn next, or go directly to gyn oncology? Not sure it matters, but I am a former patient at MSK and had a total thyroidectomy for papillary thyca, tall cell variant, in 2010. I've been doing well until just recently when I noticed very slight spotting 10 yrs post menopause. I just don't want to waste an oncologist's time if I should have a gyn do initial tests. Thank you!

Dear Laura, we're sorry to hear you're going through this. We sent your question to one of our gynecologic surgeons, and he recommended that you make an appointment with your general gynecologist first. Thank you for your comment, and best wishes to you.

Thank you for taking the time to forward my question to a MSKCC surgeon. It is so helpful to get an expert's opinion on who to see next! I will call the general gynecologist first thing in the morning. Many thanks!

Laura, thanks for your comment.

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