June 18, 2018, Milan, Italy
by Christina Baumgarten, sos-desmoid Germany
On June, 18, 2018 we held our international desmoid meeting in Milan, Istituto Nazionale dei Tumori. It was a fantastic meeting with nearly 40 medical experts and patient advocates from all over the world. After a short welcome introduction from Bernd Kasper and Alessandro Gronchi we went into a detailed discussion to refresh our published paper:
“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).”
We went through the different topics of the paper such as pathology and molecular genetics, indications of active treatment, assessment of treatment effects and regulatory issues, hierarchy of medical therapies and pain control and quality of life.
Especially the controversy during the hierarchy of treatment discussion made it clear how challenging it is for the expert to recommend the right medical therapy at the right time. Therefore it is highly recommended that desmoid tumours are only treated with the advice of an expert in desmoid tumours.
The patient advocate community emphasized that the importance of pain and quality of life is underestimated in desmoids and an expert recommendation in fertility preservation is highly appreciated in this on average young patient population.
Last but not least a big “Thank You” to the leaders of the desmoid working group B. Kasper, A. Gronchi, S. Stacchiotti, P. Hohenberger and C. Colombo and to the financial support from SPAEN, DTRF and sos-desmoid Germany.
About Desmoid-type fibromatosis (DF) and previous publications
DF is a rare and locally aggressive monoclonal, fibroblastic proliferation characterized by a variable and often unpredictable clinical course. Currently, there is no established or evidence-based treatment approach available for this disease. Therefore, in 2015 the European Desmoid Working Group published a position paper giving recommendations on the treatment of Desmoids. In 2017, an update of this consensus approach was presented based on professionals’ AND patients’ expertise following a round table meeting bringing together sarcoma experts from the European Organisation for Research and Treatment of Cancer (EORTC) Soft Tissue and Bone Sarcoma Group (STBSG) with patients and patient advocates from Sarcoma Patients EuroNet (SPAEN). In this paper, the focus lies on recent findings regarding the prognostic value of mutational analysis in DF patients and new systemic treatment options. Please see also the press release (12.10.2017) pdf here (358 KB) .