Desmoid Tumors

Focused Ultrasound Therapy

Outside Approval SquareFocused ultrasound is an early-stage, non-invasive, therapeutic technology with the potential to improve the quality of life and decrease the cost of care for patients with desmoid tumors. This novel technology focuses beams of ultrasonic energy precisely and accurately on targets deep in the body without damaging surrounding normal tissue. Where the beams converge, the ultrasound produces precise ablation (thermal destruction of tissue) enabling desmoids to be treated without surgery. 

The primary options for treatment of desmoids include surgery with the possibility of chemotherapy or radiation which can be needed depending on the location of the tumor. For certain patients, focused ultrasound could provide a non-invasive alternative to surgery with less risk of complications and lower cost.

Clinical Trials Square

Desmoid Tumors and Focused Ultrasound

Desmoid tumors (also called aggressive fibromatosis) are benign but aggressive tumors that have been treated with focused ultrasound on some anecdotal cases with good results. Open surgery is a common plan for desmoids, but the local extension of the disease can result in a significant deformity. The use of focused ultrasound has enabled limb preserving/saving care without the risks of open surgery. Focused ultrasound can also be repeated, as recurrence of desmoids is a very common event. 

 Advantages:

  • Focused ultrasound is non-invasive, so it does not carry added concerns such as surgical wound healing or infection. 
  • Focused ultrasound is radiation free.
  • It can be repeated, if necessary.

Clinical Trials

A clinical trial is currently enrolling patients at Stanford University, exploring the feasibility of focused ultrasound for the ablation of soft tissue tumors (including desmoids) of the extremities. To inquire about treatment in this trial, contact Raffi Avedian, MD at 650-721 7618 or or Pejman Ghanouni, MD, PhD at 650-498-4485 or .

A clinical trial at the Children’s National Medical Center, in Washington, D.C. is currently enrolling children and young adult patients who have a wide variety of relapsed or refractory tumors for ablative therapy. Although this trial is treating malignancies, desmoid tumors are included due to their local aggressiveness.  To inquire about this trial, contact Stephanie Forlenza, at 202-476-6841 or .

See a full list of clinical trials > 

See a list of treatment sites >

See a list of laboratory research sites >

Regulatory Approval and Reimbursement

The Model JC Haifu system has received regulatory approval in Europe for treatment of soft tissue tumors, including desmoid tumors. At present, focused ultrasound is not universally reimbursed for treatment of desmoid tumors.

Patient Advocacy

Desmoid Tumor Research Foundation
The DTFR encourages you to join the DTRF Patient Registry to facilitate research efforts. With access to your experience as a patient, researchers will be able to continue learning and making new discoveries in the field of desmoid tumors. If you have ever had a desmoid tumor, you can participate. 

Notable Papers

Ghanouni P, Dobrotwir A, Bazzocchi A, Bucknor M, Bitton R, Rosenberg J, Telischak K, Busacca M, Ferrari S, Albisinni U, Walters S, Gold G, Ganjoo K, Napoli A, Pauly KB, Avedian R. Magnetic resonance-guided focused ultrasound treatment of extra-abdominal desmoid tumors: a retrospective multicenter study. Eur Radiol. 2017 Feb;27(2):732-740. doi: 10.1007/s00330-016-4376-5.

Shim J, Staruch RM, Koral K, Xie XJ, Chopra R, Laetsch TW. Pediatric Sarcomas Are Targetable by MR-Guided High Intensity Focused Ultrasound (MR-HIFU): Anatomical Distribution and Radiological Characteristics. Pediatr Blood Cancer. 2016 Oct;63(10):1753-60. doi: 10.1002/pbc.26079.

Avedian RS, Bitton R, Gold G, Butts-Pauly K, Ghanouni P. Is MR-guided High-intensity Focused Ultrasound a Feasible Treatment Modality for Desmoid Tumors? Clin Orthop Relat Res. 2016 Mar;474(3):697-704. doi: 10.1007/s11999-015-4364-0.PMID: 26040967

Ghanouni P, Butts Pauly K, Bitton R, Avedian R, Bucknor M,Gold G. MR guided focused ultrasound treatment of soft tissue tumors of the extremities — preliminary experience. J Ther Ultrasound. 2015; 3(Suppl 1): O69.Click here for additional references from PubMed.

Click here for additional references from PubMed.