Sarcoma: The forgotten cancer

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ALBANY, N.Y. (NEWS10) — July is Sarcoma Awareness Month, shining a light on the “forgotten cancer.” Sarcoma is more prevalent in children than adults, but breast cancer survivors are at increased risk for this rare cancer.

Sarcoma is a cancer of the connective tissue and is divided into two main groups: soft tissue sarcoma—where tumors grow around the cartilage fat, muscle, and joints—and bone sarcoma.  

“Any mass that’s growing, certainly if it’s bigger than a golf ball, should be evaluated. If it’s a bone sarcoma, a lot of times that will change the integrity of the bones, so a limp or pain with activity,” said Dr. Matthew DiCaprio, Director of Orthopedic Oncology at Albany Medical Center.

He says deeper masses can be hard to detect and if the cancer has already spread to other parts of the body, like the lungs, treatments are poor. “And they’re very toxic treatments so you’ll hurt a lot of people and help very few,” he said.

If the sarcoma is localized to one area or limb, it can be curable through surgery, chemotherapy, and/or radiation.  “The treatments for sarcoma have not changed in decades. Part of that is any rare disease really does not get the funding that more prevalent diseases get,” said Dr. DiCaprio.

That’s why he founded Sarcoma Strong—an organization to fund research and raise awareness for this “forgotten cancer.” More prevalent among children, sarcoma makes up about 15% of cancers in kids. But there’s also a link between sarcoma and breast cancer survivors. 

“When they’re cured of their problem it could be a secondary thing that develops much later,” DiCaprio said. 

Radiation‐associated sarcoma is a rare complication of breast cancer treatment. “If you have a lower dose radiation therapy, the risks are much lower if it’s a much higher dose it becomes much more of an issue,” DiCaprio explained. 

Sarcoma can develop in the chest following radiation, but there is a significant time delay. “Certainly, something they should be aware of and long term have monitoring. And long term, I’m talking 10, 20, 30 years after treatment, so it doesn’t happen a year after,” the doctor said. 

Dr. DiCaprio doesn’t foresee an increase in research funding, but says we can benefit from other cancer research. “If there are advances in immunotherapy that are done for other diseases, we kind of of piggyback on that and see how they apply to sarcoma,” he said. 

Dicaprio says it will take a grassroots effort to move the needle towards better treatment. Last year’s 5k for Sarcoma Strong went virtual. People from 14 countries and 40 states raised nearly $100,000 for research. This year’s event will be held virtually as well from August 13-15. Click here to sign up or donate.

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