Helping patients replace uncertainty with understanding
Because desmoid tumors are rare, the diagnosis can raise more questions for patients than answers. Your patients may feel discouraged, like the tumor is taking over their lives. Understanding the nature of their disease and management strategies can help reduce their confusion.
You can help your patients by:
- Discussing your diagnostic strategies
- Explaining the nature of the disease and the unique burdens of desmoid tumors
- Tailoring patient management
Share important resources with your patients
SpringWorks Therapeutics can help you in providing up-to-date resources and information for your patients with desmoid tumors.
This Discussion Guide includes frequently asked questions that can inform and empower your patients to ask questions that help them better understand this rare disease. This guide may also help you know what questions to expect from your patient and how to facilitate a meaningful conversation.
Advocacy Groups and Helpful Resources
The following advocacy organizations can provide additional support and information for your patients with desmoid tumors.
The organizations listed are independent of SpringWorks Therapeutics. SpringWorks is providing these links to help patients find more information about desmoid tumors, but inclusion on this list does not represent an endorsement or a recommendation from SpringWorks for any group or organization. Logos are used with permission.
Hear From Your Peers About Desmoid Tumors
Identify desmoid tumor progression early to improve patient outcomes with this 1-page infographic endorsed by leading physicians.
Understanding Desmoid Tumors
Watch Dr. Riedel, medical oncologist from Duke Health and Duke Cancer Institute, provide an overview of desmoid tumors, including impact on patients and challenges in managing this disease.
Desmoid Tumor Management for the Medical Oncologist
Watch Dr. Riedel, medical oncologist from Duke Health and Duke Cancer Institute, discuss treatment guidelines, desmoid tumor pathophysiology, and currently available systemic therapies.
Desmoid Tumor Management for Surgeons
Watch Dr. Randall, orthopedic surgeon from the University of California Davis, review treatment guidelines and discuss important considerations relating to surgery for the management of desmoid tumors.
Here is a collection of select publications, including guidelines for treatment protocols.
- Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Soft Tissue Sarcoma V.2.2022. © National Comprehensive Cancer Network, Inc. 2022. All rights reserved. Accessed May 23, 2022. To view the most recent and complete version of the guideline, go online to NCCN.org. 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.
- Gronchi A et al. Desmoid Tumor Working Group. The management of desmoid tumours: a joint global consensus-based guideline approach for adult and paediatric patients. Eur J Cancer. 2020;127:96-107. Link
- Kasper B, Baumgarten C, Garcia J, et al. 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. Link
- Penel N, Chibon F, Salas S. Adult desmoid tumors: biology, management and ongoing trials. Curr Opin Oncol. 2017;29(4):268-274.
NCCN, National Comprehensive Cancer Network® (NCCN®).