Sarcoma Detection & Treatment
What are the symptoms of sarcoma?
The first sign of sarcoma may be the appearance of a new lump underneath the skin. Still, the discovery of a lump is not an automatic indicator of cancer. Some sarcomas may not cause any symptoms until they grow and press on neighboring nerves, organs, or muscles. Their growth may cause pain, a feeling of fullness, or breathing problems. These symptoms could be signs of many other medical conditions. Always check with your doctor for a proper diagnosis.
When to see a doctor.
Make an appointment with your doctor if you have:
- A lump that is increasing in size or becomes painful
- A lump of any size that is located deep within a muscle
- Recurrence of a lump that has been removed
How is sarcoma diagnosed?
If an oncologist suspects sarcoma, they should first order an MRI, CT scan, or PET scan to see inside the patient’s body, and then take a biopsy of cells inside the lump, working with a pathologist to determine the precise type and stage of sarcoma. From there, doctors will determine the best form of treatment: surgery, radiation treatment, chemotherapy, or targeted therapy.
Because there are more than 70 different types of sarcomas in almost any location and because the disease is so rare, it is often difficult to detect. Soft tissue sarcomas can develop in soft tissues like fat, muscle, nerves, fibrous tissues, blood vessels, or deep skin tissues. They can be found in any part of the body. Most of them start in the arms or legs. They can also be found in the trunk, head and neck area, internal organs, and the area in the back of the abdominal (belly) cavity (known as the retroperitoneum). Sarcomas are not common tumors. A general surgeon may mistake a malignant sarcoma with a benign lipoma and perform surgery to remove the mass only to discover the tumor was cancerous after the fact.
It is important to consult a team of medical, surgical, and radiation oncologists with experience in treating sarcoma for proper diagnosis and treatment. The Sarcoma Alliance has put together information on high-volume sarcoma specialists who have the experiences and resources to best treat the patient.
Sarcoma Alliance’s Recommended Sarcoma Centers
Please see our organization’s Sarcoma Center list to learn more about how we define a sarcoma center and where to find sarcoma experts in your area.
What causes sarcoma?
Though scientists do not yet know the cause of sarcoma, there are a few risk factors associated with the disease. Factors that may increase your risk of sarcoma include:
- Genetic disorders. Patients with a family history of inherited disorders, such as Von Recklinghausen’s disease (neurofibromatosis), Gardner syndrome, Werner syndrome, tuberous sclerosis, nevoid basal cell carcinoma syndrome, Li-Fraumeni syndrome, or retinoblastoma, have a higher risk of developing a sarcoma.
- Chemical exposure. Being exposed to certain chemicals, such as herbicides, vinyl chloride monomer (a substance used to make some types of plastics), dioxin or arsenic may increase the risk of sarcoma. However, most sarcomas are not known to be associated with specific environmental hazards.
- Radiation exposure. Previous radiation treatment for other cancers can increase the risk of soft tissue sarcomas.
- Long-term swelling. Having lymphedema, or swelling, in the arms or legs for a long time could increase your risk of developing a sarcoma.
National Comprehensive Care Network (NCCN) Guidelines
The National Comprehensive Cancer Network (NCCN) is a group of the leading cancer centers which are located in the United States. The NCCN provides a source of information to help patients and health professionals make informed decisions about cancer care.
What are NCCN guidelines?
The NCCN creates guidelines that outline the standards of care for different types of cancer. These guidelines provide treatment recommendations for healthcare providers to follow when treating a particular type of cancer. For those of you wanting to know precisely what the standards of care for sarcoma are and should be, then please review these guidelines for yourself. These guidelines are not written in a patient-friendly form. There are links below to online medical dictionaries to help you with words you may not be familiar with. Please discuss these guidelines with your doctor if you have questions about your care.
What are the NCCN's guidelines for sarcoma?
The NCCN Clinical Practice Guidelines in Oncology for Sarcoma are available at:
When you enter the site, you must accept the license agreement, then select “Guidelines for Treatment of Cancer by Site”, then scroll down and select “Sarcoma”. Please note that Chondrosarcoma, Ewing’s sarcoma and Osteosarcoma are listed under Bone Cancers, and Uterine Sarcoma is listed under Uterine Cancers.
Is there a patient-friendly version of the NCCN's guidelines?
The NCCN now has a patient-friendly version of the soft tissue sarcoma guidelines. You can review them at: https://www.nccn.org/patients/guidelines/sarcoma/files/assets/basic-html/page-1.html
Understanding Medical Terminology
Online Medical Dictionary
Medline Medical Encyclopedia