Currently, there are no FDA-approved treatment options indicated for desmoid tumors.1 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.2,3
A multidisciplinary team can help you determine your treatment goals
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.3 You can ask your doctor about a multidisciplinary care team approach to determine the best treatment path for you.
Building your treatment plan? Start with good information.
There’s a lot to consider when making decisions about desmoid tumor treatment. This guide outlines current care options available, and how you and your multidisciplinary care team can work together to make decisions about the management of your desmoid tumor.
Progression and thinking beyond your scans
Progression is a word used to describe how a medical condition advances, or gets worse.4
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.3,5
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.6-8 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.3,5 Are there new symptoms you are experiencing? Or have certain symptoms gotten worse?
- Effect on your daily activities.3,5 Are some simple activities or movements becoming more challenging for you? Is your ability to work affected?
Current care options for desmoid tumors
- Riedel RF. Agulnik M. Evolving strategies for management of desmoid tumor. Cancer. 2022;128(16):3027-3040.
- 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.2.2022. © National Comprehensive Cancer Network, Inc. 2022. All rights reserved. Accessed February 12, 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.
- 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.
- 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.
- Penel N, Chibon F, Salas S. Adult desmoid tumors: biology, management and ongoing trials. Curr Opin Oncol. 2017;29(4):268-274.
- 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.
- 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.
- Crago AM, Denton B, Salas S, et al. A prognostic nomogram for prediction ofrecurrence in desmoid fibromatosis. Ann Surg. 2013;258(2):347-353.
- Referenced with permission from the NCCN Guidelines for Patients® for Soft Tissue Sarcoma V.1.2020. © National Comprehensive Cancer Network, Inc. 2020. All rights reserved. Accessed February 12, 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.
- NCI (National Cancer Institute). Dictionary of cancer terms: cryoablation. Accessed February 12, 2023. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/cryoablation