A multidisciplinary team can help you determine your treatment goals
Once an accurate diagnosis has been obtained, there are several treatment approaches that may be recommended depending on the size, location, aggressiveness, and discomfort of the tumor among other factors.1,2
An open, honest discussion about what your treatment goals are can be helpful in developing your care plan. It is recommended that your care team include specialists across different fields of medicine who have experience managing your condition.2 Desmoid tumors are rare—so most healthcare providers may not have experience with diagnosing or treating this type of tumor.3
A first step to finding experienced providers may be to find 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.3
SpringWorks Therapeutics is providing this link to help patients find a sarcoma specialist by region, but SpringWorks had no role in developing this list and inclusion on this list does not represent an endorsement or a recommendation from SpringWorks for any center or physician.
When medical experts from different specialties are able to share knowledge, together they can cover the different aspects of your care. Your care team may include:3
- Medical oncologist
- Sarcoma specialist
- Surgeon/surgical oncologist
- Radiologist and/or radiation oncologist
Your primary care physician, mental health professionals, and other healthcare professionals may be involved in your continuing care.4
Progression and thinking beyond your scans
Progression is a word used to describe how a medical condition advances, or gets worse.5
An increase in the size of the tumor, as seen in a CT scan or MRI, may be one way to see whether a desmoid tumor is progressing.2,6
There may be other ways you can track the impact of a desmoid tumor on your health that are just as important. You don’t have to wait until the next scans are scheduled. You can take the lead and let your doctor and care team know how you feel:
- Pain levels.7-9 Are you experiencing more pain day to day? Is the pain getting worse? Are you feeling pain in other parts of your body?
- A change in symptoms.2,6 Are there new symptoms you are experiencing? Or have certain symptoms gotten worse?
- Effect on your daily activities.2,6 Are some simple activities or movements becoming more challenging for you? Is your ability to work affected?
When a desmoid tumor progresses, managing pain may become more of a concern. Let your care team know about any pain you experience. They can recommend options for pain relief or refer you to a doctor who specializes in pain management.10 One way to help your care team understand your needs is to track your symptoms.
“For anybody who’s diagnosed now: please research all of your treatment options.”DeAnn, a real person living with a desmoid tumor
Current care options for desmoid tumors
- 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.
- Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Soft Tissue Sarcoma V.2.2023. © National Comprehensive Cancer Network, Inc. 2023. All rights reserved. Accessed August 25, 2023. 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.
- Referenced with permission from the NCCN Guidelines for Patients® for Soft Tissue Sarcoma 2023. © National Comprehensive Cancer Network, Inc. 2023. All rights reserved. Accessed July 24, 2023. 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.
- Cancer.Net. The oncology team. Accessed February 12, 2023. https://www.cancer.net/navigating-cancer-care/cancerbasics/cancer-care-team/oncology-team
- NCI (National Cancer Institute). Dictionary of cancer terms: progression. Accessed February 12, 2023. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/progression
- 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 [supplementary appendix]. Eur J Cancer. 2020;127:96-107.
- Cuomo P, Scoccianti G, Schiavo A, et al. Extra-abdominal desmoid tumor fibromatosis: a multicenter EMSOS study. BMC Cancer. 2021;21:437.
- Penel N, Bonvalot S, Bimbai AM, et al. Pain in desmoid fibromatosis (DF) patient: prevalence, associated factors and prognosis. Presented at the European Society of Medical Oncology Annual Meeting, 2022. Abstract 1512P.
- Quintini C, Ward G, Shatnawei A, et al. Mortality of intra-abdominal desmoid tumors in patients with familial adenomatous polyposis. Ann Surg. 2012;255:511-516.
- NCI (National Cancer Institute). Pain management for people with cancer. Accessed August 8, 2023. https://www.cancer.gov/about-cancer/treatment/side-effects/pain
- Cancer.Net. Desmoid tumor: types of treatment. Accessed February 12, 2023. https://www.cancer.net/cancer-types/desmoid-tumor/types-treatment
- Kasper B, Baumgarten C, Bonvalot S, et al. Desmoid Working Group. Management of sporadic desmoid-type fibromatosis: a European consensus approach based on patients’ and professionals’ expertise—a sarcoma patients EuroNet and European Organisation for Research and Treatment of Cancer/Soft Tissue and Bone Sarcoma Group initiative. Eur J Cancer. 2015;51(2):127-136.
- 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.
- NCI (National Cancer Institute). Dictionary of cancer terms: systemic therapy. Accessed July 24, 2023. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/systemic-therapy
- Riedel RF. Agulnik M. Evolving strategies for management of desmoid tumor. Cancer. 2022;128(16):3027-3040.
- Cancer.Net Types of oncologists. Accessed February 12, 2023. https://www.cancer.net/navigating-cancer-care/cancer-basics/cancer-care-team/types-oncologists
- Crago AM, Denton B, Salas S, et al. A prognostic nomogram for prediction of recurrence in desmoid fibromatosis. Ann Surg. 2013;258(2):347-353.
- Peng PD, Hyder O, Mavros MN, et al. Management and recurrence patterns of desmoids tumors: a multi-institutional analysis of 211 patients. Ann Surg Oncol. 2012;19(13):4036-4042.
- Janssen ML, van Broekhoven DL, Cates JM, et al. Meta-analysis of the influence of surgical margin and adjuvant radiotherapy on local recurrence after resection of sporadic desmoid-type fibromatosis. Br J Surg. 2017;104(4):347-357.
- Nuyttens JJ, Rust PF, Thomas CR Jr, Turrisi AT 3rd. Surgery versus radiation therapy for patients with aggressive fibromatosis or desmoid tumors: A comparative review of 22 articles. Cancer. 2000;88(7):1517-1523.
- Ballo MT, Zagars GK, Pollack A, Pisters PWT, Pollock RA. Desmoid tumor: prognostic factors and outcome after surgery, radiation therapy, or combined surgery and radiation therapy. J Clin Oncol. 1999;17(1):158-167.
- Tsagozis P, Stevenson JD, Grimer R, Carter S. Outcome of surgery for primary and recurrent desmoid-type fibromatosis. A retrospective case series of 174 patients. Ann Med Surg (Lond). 2017;17:14-19.
- Easter DW, Halasz NA. Recent trends in the management of desmoid tumors. Summary of 19 cases and review of the literature. Ann Surg. 1989;210(6)765-769.
- Skubitz KM. Biology and treatment of aggressive fibromatosis or desmoid tumor. Mayo Clin Proc. 2017;92(6):947-964.
- Fernandez M, Bell T, Tumminello B, Khan S, Zhou S, Oton A. Disease and economic burden of surgery in desmoid tumors: a review. Expert Rev Pharmacoecon Outcomes Res. 2023;23(6):607-618. doi: 10.1080/14737167.2023.2203915
- NCI (National Cancer Institute). Dictionary of cancer terms: cryoablation. Accessed February 12, 2023. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/cryoablation