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Jewelry designer Jennifer Fisher took action when diagnosed with a desmoid tumor

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Desmoid Tumors: The Basics

Desmoid tumors are rare and locally-aggressive growths. They are not commonly known or understood, and being diagnosed with one can leave you with more questions than answers.1-3 Doctors have described desmoid tumors as having “tendril-like” growths because of how they look and how they can invade surrounding parts of your body. These “tendrils” can grow unpredictably.2

You don’t have to feel like your desmoid tumor is taking over your life. Understanding this condition is the best way to have a voice in your care. It’s also important to know what to ask your doctors and care team—so you can have a better understanding of the condition and its impact on your life. Learn more about desmoid tumors>

Confirm Your Diagnosis

Learn information that can help you get a timely and accurate diagnosis.

Learning you have a desmoid tumor

Approaches to Care

Surgery is no longer recommended as the first option for treating desmoid tumors (except in certain situations).4,5 Learn about medical therapy options.

How desmoid tumors are managed

Find a Sarcoma Center

Healthcare providers who specialize in desmoid tumors may be based at a sarcoma center. If there is not a sarcoma center close to you, it may be possible for your local doctors to work with desmoid tumor experts to create a treatment plan for you. Find a registry of sarcoma centers* on the website for Sarcoma Alliance for Research through Collaboration (SARC), a non-profit organization.

Find a Sarcoma Center

SpringWorks Therapeutics, Inc. is providing this link to help patients find a sarcoma specialist by region, but SpringWorks had no role in developing this registry and inclusion in this registry does not represent an endorsement or recommendation from SpringWorks for any center or physician.

Learn more about the Desmoid Tumor Ally Educational Program

Watch a recorded Desmoid Tumor Ally Educational Program, where you can:

  • Hear from Allies who share real-world experiences and stories
  • Learn from medical experts with in-depth information about desmoid tumors
  • Discover how you can find support and gain a sense of community from other people living with desmoid tumors


Brad, Desmoid Tumor Ally
Watch Program

Next: About Desmoid Tumors

  1. Cancer.Net. Desmoid tumor: statistics. Accessed May 29, 2024. https://www.cancer.net/cancer-types/desmoid-tumor.
  2. Kasper B, Baumgarten C, Garcia J, et al. Desmoid Working Group. An update on the management of sporadic desmoid-type fibromatosis: a European Consensus Initiative between Sarcoma Patients EuroNet (SPAEN) and European Organization for Research and Treatment of Cancer (EORTC)/Soft Tissue and Bone Sarcoma Group (STBSG). Ann Oncol. 2017;28(10):2399-2408.
  3. Penel N, Chibon F, Salas S. Adult desmoid tumors: biology, management and ongoing trials. Curr Opin Oncol. 2017;29(4):268-274.
  4. Referenced with permission from the NCCN Guidelines for Patients® for Soft Tissue Sarcoma, 2024. © National Comprehensive Cancer Network, Inc. 2024. All rights reserved. Accessed June 24, 2024. To view the most recent and complete version of the NCCN Guidelines for Patients, go online to NCCN.org/patientguidelines. NCCN makes no warranties of any kind whatsoever regarding their content, use, or application, and disclaims any responsibility for their application or use in any way.
  5. Kasper B, Baldini EH, Bonvalot S, et al; Desmoid Tumor Working Group. Current management of desmoid tumors: a review. JAMA Oncol. Accessed June 24, 2024. https://jamanetwork.com/journals/jamaoncology/article-abstract/2820212