Chaos Theory: Understanding the Genetic Chaos of Soft Tissue Sarcoma

The 50 cancers under the umbrella of soft tissue sarcoma are marked by genetic chaos, and a growing understanding of these mutations may lead to new treatments. 

LAUREL FELSENFELD, a soft tissue
sarcoma survivor, at the Mason County Relay for Life held in Ludington, Michigan in June 2015. PHOTO COURTESY OF LAUREL FELSENFELD
LAUREL FELSENFELD, a soft tissue sarcoma survivor, at the Mason County Relay for Life held in Ludington, Michigan in June 2015. PHOTO COURTESY OF LAUREL FELSENFELD
After a painful lump in her left pelvis drove Laurel Felsenfeld to see a string of specialists in 2012, she was diagnosed with a high-grade, malignant soft tissue sarcoma.

But because her cancer was described as “unclassified” or “dedifferentiated” — four separate opinions led to four different diagnoses — the nurse case manager from Detroit is living with the uneasiness of not knowing exactly what disease she has and whether it will come back. Felsenfeld says that a regimen of herbs, counseling with a cancer coach and interacting with other patients on Inspire, an online discussion forum, have helped her cope with this reality — and a lifetime of CT or MRI scans every six months.

“It’s aggravating to live with sarcoma, because it means you have to live with uncertainty,” Felsenfeld says. “But I’m still here, and I have a good quality of life.”

Soft tissue sarcoma is often referred to as one disease, but it’s far from that. In fact, it’s a group of cancers that includes at least 50 different tumor types, some of which are so rare they only affect a handful of patients in the U.S. per year. But they do have some things in common — not just that they start in the body’s connective tissues, but that they are benefiting from scientists’ rapidly advancing ability to sequence their genetic makeup.

Although surgery, radiation and chemotherapy have long been the go-to strategies for soft tissue sarcoma, advancing insights into the genome are changing the way the scientific community is approaching this group of diseases and opening up prospects for finding new, more effective treatments.

“There are a whole bunch of DNA-damaging genetic mutations — a lot of chaos in many types of sarcoma,” says Damon Reed, director of the Adolescent and Young Adult Program and medical director of the Sarcoma Department at Moffitt Cancer Center in Tampa, Florida. “The research infrastructure is improving, and now people are working together to study rare tumors, so I hope there will be a wave of new treatments to improve the prognosis for these patients.”


Even as a group, soft tissue sarcomas are rare. About 12,000 soft tissue sarcomas are diagnosed each year in the U.S., and nearly 5,000 patients will die from these cancers, according to the American Cancer Society. They can occur in any tissue of the body that isn’t bone, and they are most common in the arms and legs. Risk factors include radiation to treat a previous cancer; some inherited family syndromes; damage to the lymph system, such as lymphedema; and exposure to certain chemicals.

Talk about this article with other patients, caregivers, and advocates in the Sarcoma CURE discussion group.
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