Join us for a conversation about the classification and language used to describe desmoid tumors. We’ll hear about the challenges in communication faced by both patients and doctors, and what we – and you! – can do moving forward to help alleviate misunderstandings about this rare disease.

Special Guests include:

✨️ Ravin Ratan, MD, Associate Professor, Sarcoma, MD Anderson Cancer Center⁠ ⁠

✨️ DeAnn Sorenson, Administrator of The Desmoidian, Desmoid Tumor Patient, and Patient Advocate ⁠ ⁠

✨️ Alexander Ommaya, DSc, Desmoid Tumor Patient and Patient Advocate⁠

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At the DTRF, we want to “Spread the Word” far and wide that desmoid tumors are NOT benign.

The medical community, research publications, and other sources often use differing terms when describing desmoid tumors; one of those terms is the word “benign.” Over the years, we’ve heard countless stories that this is confusing to patients as well as clinicians. This confusion can lead to misunderstandings about treatment and minimizes the potentially serious consequences of this rare disease.

How are desmoid tumors classified?
Desmoid tumors (also known as aggressive fibromatosis, desmoid fibromatosis, and desmoid-type fibromatosis) do not metastasize. They are classified by the World Health Organization (WHO) as  “Intermediate (locally aggressive)” soft tissue tumors. They do not fall under “Benign” or “Malignant” classifications.

Learn more about the World Health Organization’s (WHO) classification of desmoid tumors, which is listed under Table II: Fibroblastic/Myofibroblastic Tumours.

To make a significant impact on behalf of the patient community, we invite you to connect with the DTRF, share our social content, and spread the word that desmoid tumors are NOT benign.

Thank you for helping raise awareness and educate the community about the classification of desmoid tumors!