Some 30 people attended the event, which was open to the public and held at the Radisson Blu Hotel at Zurich Airport, to hear about the latest findings from research into one of the rarest types of cancer – sarcoma/GIST.

The event was hosted by Dr. Sander Botter from the SAKK Patient Advisory Board. “Sarcomas account for just one percent or so of all cancers in humans,” Dr. Botter explained, “so both those affected and doctors have a correspondingly great need for information.” Gastrointestinal stromal tumors (GIST) are a type of sarcoma that doctors have only been able to diagnose definitively for about the past 20 years.

Renowned experts in pathology, surgery and oncology talked about subjects including new therapies, histology and molecular genetics, surgery and immunotherapy.

Prof. Rupert Langer from Bern University started the session by talking about the definition of a sarcoma and the difference between this disease and other types of cancer. He explained the heterogeneity of sarcomas and the different sarcoma groups, since the type of sarcoma plays a decisive role in the patient’s response to therapy. Diagnosis, a subject that is important for many patients, was also discussed.  

Prof. Christoph Kettelhack from Basel University Hospital gave a presentation on how radical the surgery of soft tissue sarcomas needs to be. He concluded that less is more. This makes it all the more important to answer some basic questions when planning surgery, such as the extent of the resection margins (can the tumor be removed with a sufficient margin from healthy tissue?). Prof. Kettelhack showed some instructive examples of the different treatment methods, adding that it is essential to involve patients when deciding which therapy to use. 

Dr. Christian Rothermundt from Cantonal Hospital St. Gallen then talked about the new therapies available for the different types of sarcoma and about immunotherapy. He presented studies in which the efficacy of alternative therapies such as adjuvant chemotherapies was tested. The sobering realization from these studies was that treatment with doxorubicin, a toxic substance, has been the standard therapy since 1993 and will remain so. Immunotherapy is an option only in selected situations.  

Dr. Michael Montemurro from Lausanne University Hospital (CHUV) talked about GIST tumors (gastrointestinal stromal tumors), which occur even more rarely than soft tissue sarcomas in general, and about the long-held hope that a “supertherapy” might be discovered. Since it is impossible for the heterogeneous tumor structure to be identified from a biopsy, current research is focusing increasingly on blood analyses with the aim of identifying the complete tumor structure and thus being able to use a “supertherapy”.

Three promising medicines that are currently being tested were presented. Unfortunately, immunotherapy has proved to be disappointing for the treatment of GIST tumors, despite producing outstanding results with other cancers such as skin cancer.

Prof. em. Hansruedi Völkle, President of the European Patients’ Academy (EUPATI), closed the session with a presentation of the EUPATI organization. One of the things he talked about was the problem of the increasing need for qualified staff for the EUPATI organization and the measures being taken to address it, above all the wide range of continuing training options for patient experts.

The lectures were followed by a lively discussion that continued during the drinks reception.

Following the success of the event, the SAKK Patient Advisory Board will be organizing another event open to the public in fall 2019, during the SAKK semi-annual meeting. Follow us on our website: https://www.sakk.ch/en/events

About the SAKK Patient Advisory Board: SAKK set up the Patient Advisory Board in 2015 with the aim of gaining a better understanding of the experiences and needs of cancer patients and their families and using this information to inform SAKK research projects. The SAKK Patient Advisory Board supports SAKK by advising it on research projects, communications or strategic affairs.