July 1, 2026
By Tammy McCausland
Sarcoma, often called the “forgotten cancer,” is rare, typically misdiagnosed, and not well known to the public. Every July, the sarcoma community wears yellow to raise awareness.
Approximately 22% of bone and joint cancer cases are diagnosed in those under age 20.1 Soft tissue cancers, on the other hand, are more often diagnosed in individuals 55 years or older.1 According to estimates from the National Cancer Institute’s (NCI) Surveillance, Epidemiology, and End Results Program (SEER), in 2026 in the United States, there will be an estimated 13,910 diagnoses of soft tissue sarcoma2 and over 4,110 diagnoses of bone and joint cancer. 3 Sarcomas may be underreported due to challenges in differentiating them from other cancers when they are located within organs.
What Is a Sarcoma?
The National Cancer Institute (NCI) defines a sarcoma as “A type of cancer that begins in bone or in the soft tissues of the body, including cartilage, fat, muscle, blood vessels, fibrous tissue, or other connective or supportive tissue.”4 There are two main types of sarcoma: soft tissue sarcoma, the most common form, develops in the soft tissues of the body; and bone sarcoma, the less common form that forms in the bone.5
The are more than 100 distinct subtypes of sarcoma, which may be why they are so hard to diagnose and treat. Osteosarcomas develop in bone, liposarcomas form in fat cells, rhabdomyoscarcomas form in muscle, and Ewing sarcomas form in bone and soft tissue.1
Awareness and Risk Factors
Much of the awareness efforts about sarcoma focus on children and young adults because sarcomas account for more than 22% of childhood cancers.
Inherited disorders can increase the risk for soft tissue sarcomas, including Li-Fraumeni syndrome, tuberous sclerosis, Werner syndrome, and nevoid basal cell carcinoma syndrome.1 Prior treatment with radiation therapy for certain cancers, long-term lymphedema in the arms and legs, and exposure to chemicals such as arsenic, thorium dioxide, and vinyl chloride are also risk factors.1 Past treatment with radiation or chemotherapy and conditions such as Paget disease, Werner syndrome, Li-Fraumeni syndrome, and Diamond-Blackfan anemia are risk factors for osteosarcoma.1
Diagnosis and Treatment
Sarcomas are diagnosed using imaging tests such as X-ray, MRI, ultrasound, CT, bone scans, and Positron Emission Tomography (PET) scans. Surgical biopsies help determine whether a tumor is malignant or benign. Surgery, radiation, and chemotherapy have traditionally been the primary tools to treat sarcoma; however, many subtypes are resistant to all three. Recent advancements in treatment are emerging.
Tecelra (afamitresgene autoleucel), a T-cell receptor therapy for synovial sarcoma received full approval from the U.S. Food and Drug Administration (FDA) in June 2026.6 The FDA expanded its indication to include pediatric patients 12 years of age and older who meet certain conditions.6
In 2022, the FDA approved atezolizumab, an immunotherapy drug, for the treatment of alveolar soft part sarcoma. This rare form of cancer makes up less than 1% of all soft-tissue sarcomas and previously had no established standard treatment.7 Recent follow-up data from 2026 indicate that patients can safely continue atezolizumab for over two years with no notable long-term side effects.8
A Childhood Cancer Survivor Study report published in 2024, confirmed that combining contemporary osteosarcoma chemotherapy with limb-salvage surgery has increased the five-year disease-free survival rate compared to older treatment protocols. This serves as evidence that specialized, multimodal care makes a difference in altering the outcome.
Artificial intelligence (AI) is showing promise for earlier detection of sarcomas. A liquid biopsy test being developed by Cancer Research UK using AI models could help identify Ewing sarcoma before it metastasizes or returns after treatment.9
Survivorship
According to the Sarcoma Foundation of America, the overall five-year survival rate for localized soft tissue sarcoma is about 83%, 60% for regional disease and 17% for metastatic disease.”10 For primary bone sarcoma, the overall five-year survival rate for localized soft tissue sarcoma is about 84.5%, 68.8% for regional disease and 32.5% for metastatic disease.”10
Awareness leads to earlier diagnosis, and earlier diagnosis increases survivorship. For the forgotten cancer, being remembered is the first step.
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