How to Find the Right Physician
After being diagnosed with a desmoid tumor, it is important to seek out a doctor who is familiar with desmoid tumors, typically a sarcoma specialist. Desmoid tumors are extremely rare, and are often misdiagnosed or mistreated. Patients with desmoid tumors ideally should be evaluated at a sarcoma center by a multidisciplinary team which includes a medical oncologist, pathologist, surgical oncologist, interventional radiologist and others.
Sarcoma specialists can typically be found at major academic medical centers and can help support you with a robust team of doctors who are more likely to be knowledgeable in desmoid tumor care. These major medical centers may have designations as a National Comprehensive Cancer Network (NCCN) center or as a Sarcoma Alliance for Research through Collaboration (SARC) center.
Getting a Second Opinion
Desmoid tumors are rare and many doctors, even oncologists, may not be familiar with or have experience in treating this kind of tumor. Sometimes, it may make sense to get a second opinion to provide you with more information and choices regarding approach to treatment. Watch Dr. Candace Haddox speak with DTRF’s Lynne Hernandez about “Getting The Most Out Of Your Consultation And Treatment Plan” during our 2022 Desmoid tumor Awareness Month Facebook Live event
The Importance of a Multidisciplinary Team
The Global Consensus Paper on Desmoid Tumor Treatment recommends that patients find or be referred to an experienced multidisciplinary team at the time of diagnosis. To see an example of how a multidisciplinary team evaluates and manages your care, watch the “Mock Tumor Board” presentation from experts at the University of Pittsburgh – Hillman Cancer Center from our 2022 DTRF Patient Meeting.
