Desmoid Tumors: Misdiagnosis and Resources

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Alessandra Maleddu, MD, Sarcoma Specialist at the University of Colorado, discusses the misdiagnosis of desmoid tumors and provides some resources for patients.

Desmoid tumors are rare, benign, locally invasive, soft tissue tumors. They are commonly associated with a high recurrence rate, but with no metastatic potential. The tumors and tendril-like growths that they cause may be located anywhere in the body. Common symptoms include long-lasting pain, loss of physical function, and disfigurement. These symptoms can also often lead to anxiety, depression, and negative thoughts.

As Dr. Maleddu explains, women are two to three times more likely to be diagnosed with a desmoid tumor than men. The most common age of diagnosis is between 20 to 44 years of age. Due to the varying presentation of symptoms, desmoid tumors are often misdiagnosed, with an average misdiagnosis rate of 30% to 40%.

Recently, SpringWorks Therapeutics has updated their desmoid tumors website to include more resources for patients. This includes a doctor discussion guide and care option guide that can help patients find sarcoma centers, physicians, and treatment options best suited to their needs.

Chapters:
Introduction 00:00
Desmoid Tumors Overview 00:43
Diagnostic Journey 1:48
Importance of Early Diagnosis 3:18
Advice for Patients and Families 4:22
Current Management 5:07
Updated Resource Guide 6:38
Category
Oncology
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