If you are diagnosed with a desmoid tumor it is recommended that you be evaluated in a major, academic hospital with experts in sarcoma. Due to the rarity of desmoid tumors, they are often misdiagnosed or mistreated. Patients with desmoid tumors should be evaluated by a multi-disciplinary team including surgeons, medical oncologists, radiation oncologists, geneticists and nurses.

 

If you’re looking for a doctor near you, the directory below allows you to search a global database of doctors who are members of the Connective Tissue Oncology Society (CTOS), an international group of physicians and scientists with a primary interest in tumors of connective tissues. Search the map by state, country or physician name to find a CTOS member near you.  Sarcoma specialists are much more likely to know about, to have encountered and/or to have treated desmoid tumors.  As always, patients may reach out to us with any questions by emailing lynne@dtrf.org.