If you or someone you care about has been diagnosed with soft tissue sarcoma, you may face a lot of difficult questions. Where should you go for care? What are your treatment options?
Reading this guide is a good place to begin. From here, you can visit other sections of our soft tissue sarcoma guide for more in-depth information on specific sarcoma subtypes, specialized sarcoma treatments, and more.
Soft tissue sarcoma is a rare cancer that begins in the soft tissues of the body. Examples of soft tissue include fat, muscles, nerves, tendons, and blood and lymph vessels. Soft tissues can also be contained within organs.
Sarcoma can happen in soft tissue anywhere in the body, but 40 percent occur in the arms and legs.
Unlike many cancers, soft tissue sarcoma often does not cause symptoms in the early stages. This is because it occurs in soft (usually elastic) parts of the body that are easily pushed out of the way by a growing tumor.
The first symptom people with soft tissue sarcoma may notice is a painless lump. Sometimes a tumor might cause pain, soreness, or difficulty breathing if it presses on nerves, muscles, or blood vessels. Many people notice soft tissue sarcoma only after an unrelated injury draws attention to that part of the body.
Certain inherited medical conditions can make a person more likely to develop soft tissue sarcoma. These include neurofibromatosis, familial adenomatous polyposis (FAP), Li-Fraumeni syndrome, and retinoblastoma.
Some soft tissue tumors are associated with genetic abnormalities. For example, most desmoid tumors are linked to a mutation in the CTNNB1 gene. But most of the time, there’s no clear reason why this cancer develops.
People who have received prior radiation can develop soft tissue sarcoma.
Soft tissue sarcoma treatments may include surgery, chemotherapy, radiation therapy, or a combination of these therapies. Which approach is right for you depends on many factors. These include the size, location, and subtype of sarcoma as well as your own personal preferences. You may also be eligible for a clinical trial of a new therapy if your tumor has spread.
- There are more than 80 different subtypes of soft tissue sarcoma or sarcomalike growths. At MSK, making an accurate sarcoma diagnosis is a key first step in developing a personalized treatment plan.
- Soft tissue sarcoma operations are best performed by surgeons who are highly experienced in removing soft tissue tumors. At MSK, we see more than 600 new patients with soft tissue sarcoma each year. We are often able to remove tumors that are considered inoperable at other cancer centers. We have published our experience in the diagnosis and treatment of more than 10,000 people with soft tissue sarcoma.
- People with advanced soft tissue sarcoma may benefit from leading-edge therapies, such as immunotherapy or targeted therapy. These are often offered through clinical trials. MSK runs one of the largest soft tissue sarcoma clinical trial programs in the United States.
- Radiation therapy is another important part of care for some people with soft tissue sarcoma. Radiation may be given before surgery to shrink a tumor or after surgery to reduce the chances that a tumor will come back. MSK’s radiation oncologists have special training in caring for people with soft tissue tumors.