How Research Is Driving the Latest Treatments for Sarcoma

MSK Surgeon Aimee Crago

Surgeon Aimee Crago (center) specializes in the treatment of sarcoma.

The category of soft tissue sarcoma describes a group of rare and challenging cancers — more than 50 types — which grow in the body’s supportive and connective tissues, including muscles, tendons, nerve fibers, and cartilage. Most types of sarcoma have good survival rates if they are caught early, but they are much harder to treat once they begin to spread. (Cancers that originate in the bone are also sarcomas.)

Most physicians see only a handful of soft tissue sarcoma cases in their whole career. But Memorial Sloan Kettering has an entire team of experts devoted to improving diagnosis and treatment of sarcoma and advancing patient care.

Surgeon Aimee Crago specializes in the treatment of sarcoma, including liposarcoma and desmoid tumors. “Most of the more common cancers that we think about — such as breast, lung, and colon cancers — are tumors called carcinomas that grow from the linings of our organs,” she says. “I tell my patients that sarcomas come from the tissues between our organs. And in the same way that different carcinomas behave differently, sarcomas have different behaviors based on their type.”

The Challenges of Surgery

Sarcomas can occur anywhere in the body, including the arms and legs, areas of the torso in and around vital organs, and the face and neck. “When you’re removing a sarcoma, you always have to think about whether surgery will disrupt how a patient is able to function,” Dr. Crago says. For example, a sarcoma in the thigh may affect the ability to walk, while a sarcoma near the jaw may make things like talking and chewing difficult.

“And because each sarcoma behaves differently, it’s important to know the sarcoma subtype when we plan our surgeries,” she says. “If a tumor is more likely to come back, we may have to be more aggressive when we remove it.”

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Genetic Studies Lead to New Approaches

In addition to being a surgeon, Dr. Crago also conducts laboratory research on the genetics of sarcoma. That research is leading to a better understanding of how the disease develops and behaves, which helps to improve care for patients.

“A lot of the new information we’ve learned is about the specific genetic events that cause each of the different sarcoma types to form,” she says. “This understanding lets our pathologists better define each patient’s tumor. It also enables research into how these genetic mutations affect the cell and allow it to become cancer — and ultimately how they can be targeted to turn off cancer growth.”

One of the sarcoma types that Dr. Crago focuses on in her laboratory work is liposarcoma, which originates in fat cells and makes up about 20% of all soft tissue sarcomas. These tumors can appear anywhere in the body, but are most common in the thigh and abdomen. “In liposarcomas, we’re learning more about the genes that drive them, and we’re able to develop drugs that target them,” she says.

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A Focus on Desmoid Tumors

Another type of tumor that Dr. Crago investigates is desmoid tumors, also known as desmoid fibromatosis. Desmoid tumors arise in the soft tissues, but not all experts agree on whether they are sarcomas — in large part because they don’t have the ability to spread to other parts of the body like most sarcomas do. Their unusual characteristics make treating them difficult.

“Desmoid tumors are a challenge because once they develop they often keep coming back in the same place,” Dr. Crago says. “We try not to operate on them unless they are really affecting how a patient functions, because the surgery can cause more complications than the tumors themselves. Another thing that’s interesting is that they often don’t grow beyond a certain size, and may even spontaneously regress.”

Soft Tissue Sarcoma Clinical Trials and Research
Our doctors and researchers are constantly seeking new and improved treatments for soft tissue sarcoma through our program of clinical trials.

Because of the potential harm in surgically removing these tumors, researchers are looking for ways to treat them with drugs. Dr. Crago and her colleagues are currently completing a phase III clinical trial evaluating the drug sorafenib (Nexavar®, originally approved to treat kidney cancer) in desmoid tumors.

“Because MSK sees such a large number of patients , we are able to conduct clinical trials for soft tissue sarcoma that look at new treatments for patients,” she says. “This gives us — and our patients — the unique opportunity to gain access to these drugs much sooner.”

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Greetings... Are there new advances in treating late stage metastatic uterine leiomyosarcoma specially if caused by mutation in the TP53 gene (Li-Fraumeni)? Thanks!

Dear Yousef, we currently have the following clinical trials investigating new treatments for people with uterine leiomyosarcoma: If you are interested in making an appointment to discuss these or other possible treatment options with one of our specialists, please contact our Physician Referral Service at 800-525-2225. Thank you for reaching out to us.

I have desmoid fibromatosis of the abdomen. I first had surgical removal of a 12 cm tumor in the mesentery in 7/15. The tumor has returned; walnut sized near the pancreas andtwo pea sized in the mesentery. At present I am being treated with tamoxifen 20mg and celebrex 200mg. Any suggestions? It returned in 16 months.

Hello, I am looking for treatment for my mom who was diagnosed in December with lyeimyosarcoma that started in the adrenal gland. She has a very large mass on the kidney area that has metastasized. Is there any new treatment for her type of cancer when chemo is not an option due to her age (84 yrs). Thanks

Dear Angela, we’re sorry to hear about your mother’s diagnosis. Depending on the mutations that are present in her cancer, she may qualify for a clinical trial. If she would like to learn more about treatment at MSK, she can call 800-525-2225 or go to for more information on making an appointment. Thank you for your comment, and best wishes to you and your mother.

My son was diagnosed at 18 with Osteosarcoma to his left tibia and had map then above knee amputation Oct 27th with 99% nerousis. Since then no treatment at all . Just watch and wait. He has metatisistc disease to both lungs but no change since August when chemo ended. The won't operate on his lungs. I'm not sure what to do next?

I had a laparoscopy and removal of a 5cm leiomyosarcoma, and an additional mass which may or may not be a lymph node in the small bowel. Any trial results I could benefit from.

Dear Kathleen, we’re very sorry to hear about your diagnosis. If you are interested in arranging a consultation with an expert at MSK, including discussing the possibility of a clinical trial, you can call 800-525-2225 or go to for more information on making an appointment. Thank you for your comment, and best wishes to you.