Reports from Europe 2007
An ESUN Article
Editor's Note: Roger Wilson is a leiomyosarcoma survivor and an activist for sarcoma advocacy in the UK. Roger is the founder and maintainer of the Sarcoma UK website. He reports here on two meetings in which he recently participated.
1st Conticanet Patient Advisory Group Workshop
When a leading sarcoma specialist emails patient groups and asks for a meeting something must be "in the wind." When this happens in Europe, the wind must be a warm one. So when an email arrived from Professor Jean-Yves Blay, one of the leading sarcoma oncologists in France, it was something to be taken seriously.
Like my colleagues in patient groups around Europe (there are not many of us!!) I had heard of Conticanet – an initiative led by Professor Blay to create a network of sarcoma specialist units undertaking clinical research. It is supported by the European Commission. One of the plans for Conticanet is to work with patient groups to see how accrual of patients into clinical trials can be improved.
Given the fragmented nature of patient support and the relative newness of patient groups in Europe the first step was clearly to put these groups into contact with each other and this was the purpose of the email – a meeting in Paris shortly before Christmas 2006. In fact, most of us know one another already through the activities of the European Cancer Patient Coalition (ECPC) and the work of the annual New Horizons conference (supported by Novartis) which brings together CML and GIST patient groups worldwide. But Professor Blay created a new agenda, one which we are investigating more fully.
Photo: Sarcoma patient groups from France, UK and Germany meet with Professor Jean-Yves Blay of Conticanet to discuss European networking. Pictured: Back row: Mariek Podevin (SOS Desmoid – France)), Dr Simon Bacconnier (Conticanet), Kai Pilgermann (Das Lebenshaus - Germany), Roger Wilson (Sarcoma UK), Estelle Le Cointe – (Ensemble contre le GIST – France), Vincent-Olivier Beldon (Grafs – France); Front row: Markus Wartenberg (Das Lebenshaus – Germany), David Robinson (GIST Support UK), Professor Jean-Yves Blay (Conticanet), Judith Robinson (GIST Support UK)
Can we create a pan-European sarcoma patient network? We hope so, it is an ambitious idea, and there can only be benefits for patients. We are all committed to research and we all help patients to get involved – whether as donors of tissue, participants in clinical studies, or supporters of fund-raising events which can help advance new research.
Who are we? We have GIST support groups in many European countries (many associated with the Liferaft Group and GIST Support International). In France there is the important work of SOS Desmoid – which has a close relationship with researchers working with these rare tumours. In the UK there is Sarcoma UK, more broadly based on information and support. There are small groups elsewhere, some regional, some centred on a single hospital, others focussed solely on fund-raising for research. Many sarcoma patients turn for support and information to broadly based groups which work across a range of cancers.
The challenge for a patient network in Europe is more than just a shortage of existing patient groups. There is the challenge of language and geography. The starting point is the European Union with 27 countries now, three more applying to join, and another 19 acknowledged as European. Most have their own language, some more than one, all have different health systems, and there are vastly differing cultures which affect the relationship between doctor and patient. It is clear that patient advice can only be provided at the national level, not from a central international organisation, so one of the first steps is helping to get a national organisation into existence.
The two largest patient groups – Das Lebenshaus in Germany and Sarcoma UK – are themselves very small organisations with little capacity for undertaking development work. But now we are working together to see if a plan for a pan-European sarcoma patient network can be created and implemented. It must make sense for patients and for patient support, as well as for the ambition of helping the search for better treatment through more patients accessing clinical trials.
Editor's Note: Conticanet stands for CONnective TIssue CAncer NETwork. The Patient Advocacy Group Workshop was held in Paris, France on December 14, 2006. You can download the minutes of this workshop (as a PDF file) by clicking here and you can visit Conticanet's website by clicking here.
British Sarcoma Group Conference 2007
The British Sarcoma Group met in Manchester on 1st and 2nd February 2007 for its 3rd annual conference. Over 130 delegates, which included a group of patients and carers were informed by a range of high quality presentations and discussions, entertained by an evening quiz and dinner, and intellectually challenged by a philosophical debate.
The meeting is good at giving younger doctors undertaking research projects as part of their training the opportunity to present their work to a distinguished and expert audience. Ten younger doctors and a smaller number of professional support staff were able to present their work, which covered a wide range of activity from diagnostic processes to surgical cases, chemotherapy response and audits of patient outcomes.
Key headline presentations on the first day looked at the role of PET/CT scanning in managing sarcomas, at angiogenesis inhibition and at the treatment of retroperitoneal sarcomas.
Dr Mike O’Doherty from Kings College London crafted a strong case for the use of PET/CT (combined positron emission tomography and computed tomography) in areas of the patient pathway including diagnostic (biopsy), staging and surveillance (both local recurrence and extrathoracic metastasis). Its role in detecting the malignant transformation of neurofibromatosis (NF1) was also highlighted.
Professor Ian Judson gave a clear description of what angiogenesis is and the part it plays in tumour development and growth. He expanded on the role of anti-angiogenesis and talked about the new treatments which are now coming into clinical trials, discussing what is known about their effectiveness in treating sarcoma and their progress towards possible licensing.
Mr Andrew Hayes, one of the sarcoma specialist surgeons from the Royal Marsden Hospital, looked at advances in the management of retroperitoneal sarcoma, and the search for better outcomes for a group of patients who often have a poor prognosis when diagnosed. He emphasised that it is crucial to have a complete resection as the first surgical procedure and that while a core biopsy is safe it should be done with a view to defining management, rather than as a diagnostic process. Although organ resection is common (about 57%) the major factors which affect outcome are tumour clearance and grade.
Sessions during the first day looked more generally at work on the diagnostic pathway and at research which impacts on the management of treatment. Two current clinical trials were reported and discussed – EURAMOS (the international osteosarcoma study) and VORTEX (the trial of adjuvant radiotherapy for extremity sarcoma). Dr Jeremy Whelan also reported on trials for children and young adults, and the rate at which patients entered these trials.
The first day ended with a quiz between a Royal Marsden based team (Chelsea) and a team led from Manchester (United). Chaired by BSG Secretary Mr Rob Grimer it mixed general knowledge and specialist sarcoma knowledge. The Chelsea team won by 4 – 3.
Day two started with parallel sessions on surgery and oncology. Delegates to the surgical session were challenged by the drama and complexity of bone sarcoma surgery in the pelvis with Mr Steve Cannon, and surgery within the chest wall, including lung metastases, from Mr Alan Kirk. Dr Jai Kulkarni, a consultant in rehabilitation medicine, gave a thoughtful view on how the best patient outcome can be achieved following amputation.
The oncology session started with a look at the science of sarcoma. Chromosomal imbalances shared between leiomyosarcoma and GIST led into a full discussion of mutational analysis for GIST from Dr Maria Debiec-Rychter of Leuven University. Dr Mike Leahy then gave a comprehensive run down of where GIST trials had reached and looked forward to new trials now in discussion. He demonstrated that the management of GIST is one of the fastest moving fields in oncology today, stimulated by the introduction of highly active targeted therapies. However the optimization of management of patients with GIST is complex and current advice from NICE is obsolete and misleading. Dr Paolo Casali, of Istituto Nazionali Tumori in Milan, picked up the story there and took it towards all sarcomas with illustrations from liposarcoma and chordoma as well as GIST. Cytotoxic and targeted treatments are both relevant and a future development will be in combination therapies. Recognising and understanding the patterns and the nature of tumour response to treatment will be a key challenge in developing such treatments. Sarcomas with a proven genetic translocation are likely to be the first targets.
Photo: Dr Paolo Casali, of Istituto Nazionali Tumori in Milan, giving a presentation
After coffee the meeting came together again. Dr Ian Lewis looked at why fifteen years of Ewing's sarcoma clinical trial results from Germany and the UK presented a different range of patient outcomes, despite the trials being nominally the same protocol. The conclusions, although preliminary, challenge specialists in both national groups. Dr Sue Burchill talked about her work looking at the molecular basis of Ewing's sarcoma, pointing to how a better understanding of the disease was leading to identification of prognostic indicators and to new approaches to treatment.
Dr Ros Ferner, a consultant neurologist at Kings College Hospital, and specialist in the treatment of neurofibromatosis presented the work of her group and discussed the transition to malignancy which many of her patients suffer from. MPNST (malignant peripheral nerve sheath tumour) is the commonest sarcoma resulting from the inherited condition NF1, though it has been identified in a number of other sarcomas too. This disfiguring complaint presents many challenges to doctor and patient.
The conference moved on to discuss the introduction of the NICE Improving Outcomes Guidance and to look at approaches to audit from the south-west and from Leeds before hearing a philosophical discussion about adjuvant chemotherapy with the Italian viewpoint offered by Dr Paolo Casali and the UK viewpoint from Dr Mike Leahy. Two thoughtful presentations to give delegates something to reflect upon on their journey home.
V4N1 ESUN Copyright © 2007 Liddy Shriver Sarcoma Initiative.