A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!

































Meeting Reports

GSUK Patient Meetings

Birmingham Meeting March 2019


  Introduction - Jayne Bressington (GSUK) watch video
  Molecular diagnostics - Dr Phillippe Taniere (Histopathologist) watch video
  GIST and molecular data - Dr Fiona McRonald (NCRAS) watch video
  Developments in GIST surgery - Samuel J Ford (Sarcoma Surgeon) watch video
  Q&A Panel - Various experts
watch video
  Research Update - Jayne Bressington
watch video


Manchester Meeting October 2018

Video 1 of 5:
Introduction by Nic Puntis - GIST Support UK

Video 2 of 5:
Update by Jayne Bressington - GIST Support UK

Video 3 of 5:
New Surgical Tech by Myles Smith - GIST Support UK

Video 4 of 5:
Trials & Latest Developments by Spryidon Gennatas - GIST Support UK

Video 5 of 5:
Ask the Expert, GIST Support UK


London Meeting March 2018


  An update on Clinical Trials - Dr Charlotte Benson         watch video  
  GDPR - new Data Protection Rules - James Palgrave watch video  
  Patient Power & Fundraising - Jayne Bressington and Victoria Janes watch video  


Cardiff Meeting October 2017


  Welcome - Nic Puntis (Chair) watch video
  Donation devices and Fund Raising - Victoria Bassett watch video
  Managing the Side-Effects - Dr C Morgan & C Methven watch video
  Managing the Side-Effects - Discussion watch video
  GIST Support UK - What's New in GIST & Current Research - Dr Adam Dangoor watch video
  GIST Support UK - What's New in GIST & Current Research - Questions and discussion watch video
  Evaluation of the day - chaired by Nic Puntis watch video

Sheffield Meeting March 2017


  Welcome - Nic Puntis (Chair) watch video
  Round table discussion on Patient and Carer Concerns
  The Oncological Management of GIST - Dr Robin Young watch video
  How are GISTS imaged? - Dr Christine Ingram watch video
  E GIST and Pathology Dr Malee Fernando watch video
  Derivation of Cell Lines from GIST - Dr Karen Sisley, Dept of Oncology and metabolism University of Sheffield Medical School watch video
  Update on Role and Considerations by an MDT - Sister Eades watch video
  GIST Support UK and Research - Jayne Bressington watch video

London Meeting October 2016


  Welcome - Nic Puntis (Chair)  
  Developments in Diagnosis, targets & new drugs for GIST
Professor Ian Judson - Consultant medical oncologist
watch video
  Leading Edge Research into Sarcomas
Janine Salter - Biobank Manager,Biomedical Research Centre, Royal Marsden 
watch video
  The Role of Complementary Therapies
Jeannie Dyer - Clinical Lead for Complementary Therapies, Royal Marsden
watch video
  GIST Case Studies 
Dr Palma Dileo - Consultant Medical Oncologist, Sarcoma Unit, University College Hospital 
watch video

Nottingham Meeting 4th March 2016


  Welcome and Introduction to the Trustees - Nic Puntis (Chair)  
  Current Learning and developments in GIST
Dr Ivo Henning - Consultant Oncologist, Nottingham City Hospital
watch video
  The ups and downs of Regrafinib Treatment
Michael Sayers - patient on Regorafinib (Note: the surtitle on the video says "October", but this is wrong!)
watch video
  Dosing Management on Anti-cancer Drugs
David Falconer - Former Pfizer National Lead on Sunitinib for GIST
watch video
  The Value of Mutational Testing 
Dr Philippe Tanière- Consultant Histopathologist
watch video
  Communication Issues between Diagnosis and Treatment 
- Led by the Trustees
watch video

Meeting October 2015


Nic Puntis (chair) - Welcome
Dr Peter Simmonds (Southampton University Hospital)- Learning the language of GIST - MDT, CT, MRI, DGH . . 
Dr Robin Jones (The Royal Marsden) New Research into GIST                               
Dr Claire Foster (University of Southampton) Living and caring in this GIST world
Nic Puntis and Trustees GSUK - its progress and future plans



 Watch videos

Manchester Meeting April 2015

Nic Puntis (chair) - Welcome
Sarah Welby (The Christie)- What is a CNS?
Jayne Bressington (GIST Support UK) - Nutrition with a damaged gut                                           
Dr Mike Leahy (The Christie) - Getting best care?
Jayne Bressington (GIST Support UK) - Progress and Future Plans



Watch videos

Birmingham Meeting October 2014
Speakers: Barbara Doré (chair) - Welcome
Dr Ramesh Bulusu (Addenbrokes Hospital)- GIST and PAWS GIST Current Position and Outlook
Dr Phillipe Taniere (QEH Birminham) - The Role of Mutation Analysis in the management of GIST
GSUK Trustees - Status Update
Jayne Bressington - Update on the National GIST Tissue Bank
Dr David Peake (QEH Birmingham) - Adjuvant Therapy, who it's for and the benefits.
Barbara Doré - Update and closing session
 Watch videos
Leeds Meeting April 2014
Speakers: Barbara Doré (chair) - Welcome
Professor Penella Woll, Dr Maria Marples - GIST Past Present and Future
Jayne Bressington (Trustee & PAWS-GIST Project Director) - Update on PAWS GIST and the PAWS Clinic
Professor Andrew Hall - The National GIST Tumour Bank
Judith Robinson - The Psychological impact of dealing with GIST
Maxine Eades and Gill Quarrell - The role of the CNS in the management of GIST.
Barbara Doré - Update and closing session.


Watch videos

Bristol Meeting April 2013
Speakers: Judith Robinson - Introduction from New Chair, Barbara Doré
Dr Newton Wong - Mutational analysis of GIST
Jayne Bressington Update on PAWS GIST Trustee & PAWS-GIST Project Director
Dr Carys Morgan - What is a MDT & how does it work?
Closing talk from Judith Robinson - A big thank you to those retiring.
Steve Falk - An update on drugs & treatment in the pipeline


Watch videos

Oxford Meeting October 2012
Speakers: Prof Bass Hassan - Research-driven Clinical Decision Making
Jayne Bressington - Update on PAWS-GIST
Pippa Large - The role of the Clinical Nurse Specialist
Dr Claire Marriot - The Maggie's Centres
Judith Robinson - GSUK Update and closing session


Watch videos

Newcastle Meeting April 2012
Speakers: Prof Andy Hall - Tumour Banking and how patients can help
Jayne Bressington - Update on PAWS-GIST
Dr Peter Stephens - Therapeutic Management following resection of high-risk GIST
Dr Mark Verril - Patient Choice in relation to Adjuvant Therapy
Judith Robinson - GSUK Update and closing session


Watch videos

London Meeting October 2011
Speakers: Prof Ian Judson - New aproaches to the teatment of GIST
Jayne Bressington - Update on PAWS-GIST
Mr Long R Jiao - Advances in surgical procedures for GIST
Judith Robinson - Open discussion on future plans for GSUK


Watch videos

London Meeting October 2010
Speakers: Dr Michelle Scurr - Getting best supportive care
Judith Robinson - workshop on the role of the Clinical Nurse Specialist
Read report
Birmingham Meeting April 2010
Speakers: Nick Duncan (principal pharmacist QE Hospital Birmingham) - managing side effects of drug treatment for GIST
Dr Geh and Dr Taniere - mutations in GIST and their implications
Jane Ballantyne (CAB) - state benefits for cancer patieuse of imaging for evaluation and diagnosisnts
Read report
London Meeting October 2009
Speakers: Dr Beatrice Seddon - Developments in treatment (report awaited)
Dr Simon Wood - Data collection project
Dr Zahir Amin (consultant radiologist) - use of imaging for evaluation and diagnosis
"Straw poll" on Side-effects of Imatinib
Read report
Manchester Meeting May 2009
Speakers: Roger Wilson - NICE decisions and the care of GIST
Dr Mike Leahy - current research into GIST
Dr Dominic Bray (clinical psychologst) - living with uncertainty
Read report
London Meeting September 2008
Speakers: Sarah Newton (dietician) - eating problems
Prof Ian Judson - q&a session on adjuvant and neo-adjuvant therapy
Read report
Sheffield Meeting May 2008
Speakers: Dr David Hughes (pathologist) - the role of pathology in diagnosis of GIST
Prof Penella Woll - q&a session on current trials for adjuvant and neo-adjuvant use of Glivec
Read report
London Meeting October 2007
Speakers: Evangelos Efthimiou and Satvinder Mudan - research on the use of Glivec prior to surgery for GIST.
Discussion on complementary therapies.
Read report
Manchester Meeting May 2007
Speakers: Roger Wilson - the formation of the Sarcoma trust
Dr Mike Leahy - q&a session on treatment
Dr Bill Newman - q&a session on mutational testing.
Read report
London Meeting Oct 2006
Speakers: Dr Beatrice Seddon and Cerys Propert-Lewis (Clinical Nurse Specialist). A question and answer session covering current postion on mutational testing, coping with side-effects of Glivec, and similar issues.
Read report

International Meetings

New Horizons 2018 in Vienna, Austria read report

New Horizons 2017 in Wayne, NJ USA read report

New Horizons 2016 in Barcelona read report

SPAEN Meeting Berlin 2011
(reported by Jayne Bressington)

    Speakers: Dr Ramesh Bulusu - an update on the treatment of PAWS GIST
Dr Peter Reichart   - an insight into new treatment options
Dr Dirk Strauss      - the need for specialist surgical expertise when dealing with sarcomas

Read report


New Horizons 2010 in Vienna Read report

Paediatric GIST Clinic June 2008 Read report

New Horizons 2008 in Bavenno Read report

New Horizons 2007 in Bad Nauheim Read report



























































































































































































Clinical Trial - 3 v 5 years adjuvant imatinib recruitment extended until 31st March 2020- trial centre list update here

The next PAWS-GIST clinic is happening on Friday 12th April 2019. Registration is via PAWSGISTCLINIC.ORG.UK 

Our next Patient Meetings are in Leeds on Friday 4th October 2019 and London - 6th March 2020. If you would like to join us please email  to register. We look forward to seeing you...

Rare Cancer Patient Survey - collecting feedback on rare cancer patient experience with clinical trials...

On the 10th October the Scottish Sarcoma network are holding a day called RISE at the Western Park Hotel in Falkirk. The day is dedicated to people with a sarcoma diagnosis and their families to focus on "what matters to me". This poster contains the registration details if you would like to attend. GIST Support UK will be represented at this meeting and we look forward to seeing you. 

A big thank you to Scotmid Co-operative for choosing to support GIST Support UK and the development of our national tissue bank. Read more here


If you missed any of our previous meetings, you can view the speakers' presentations here

Clinical Trial - 3 v 5 years adjuvant imatinib - trial centre list update here

19th August 2017 - Page 19 of the Times GIST report - READ HERE

New UK clinical practice guidelines for the management of gastrointestinal stromal tumours (GIST) published by British Sarcoma Group - NEWS >>>

GSUK's Chair Nic Puntis discusses the BBC's report on the Cancer Drugs Fund on BBC Wiltshire Radio - NEWS>>>.  

Update on GIST clinical trials that are recruiting and in the pipeline....

We have launched our first GIST patient survey and hope to gather a better understanding of the landscape for GIST patient treatment in the UK. The survey closes on 10th September 2016 so if you would like to participate please complete the survey by clicking this link

'ALT' GIST Trial to open in the UK soon! We have been alerted to a new trial that will be opening in the UK in the near future for metastatic GIST patients. Read more on our Trials & Research page 

PAWS-GIST Clinic 7 - Newsletter June 2016

GSUK attends Cancer52 parliamentary reception to raise awareness of rare and less common cancers.

GSUK Research Update 2016 - Read all about it here

NHS England's Sarcoma Service Specification consultation is open until Weds 20th April 2016.       Please register your views by responding directly via this link.                             GSUK's response can be viewed here

Cycle for GSUK! We have four allocated charity places on the RideLondon event for this year and also for 2017 and 2018. Go to our News page to find out more!

The Masitinib Trial is now open.  For further details of this trial, and to find out which centres and clinicians are involved, please go to our Research & Trials page. 

Regorafenib has remained on the NHS England Cancer Drug Fund List for GIST patients! Read more!

Can you help Professor Eamonn Maher with his research Study? If you have had, or have, two or more primary GISTs, or a GIST and another tumour, find out more at the bottom of our research page

PRESS RELEASE - UKTV announces GIST Support UK as its Charity of the Year 2015

TUMOUR BANK UPDATE: "We have been granted approval from the NHS ethics committee for our National GIST Tissue Bank which will store these valuable GIST tumour samples for research. If you are about to have an operation and would like to donate your tissue for research please email  with your contact details. Visit our Retention of tissue page for regular updates.

Scottish Sarcoma Network: Interested in attending their Sarcoma education days or finding out about the services on offer ? Read our News page

Use of human tissue
Do go to our new "Retention of Tissue" page and please sign a consent form!

GSUK funds research!
GSUK provides £20,000 from donated funds to help start a research project at the Royal Marsden. Visit our News page for further information and picture.

Funds being raised for UK PAWS GIST clinic
See our News Page for more information.

NICE approves improved treatment for ascites
The PleurX system allows the patient to drain fluid from the abdominal cavity without having to pay repeated visits to hospital. More information on our News Page.

European Commission approves three years' adjuvant use of Glivec
Visit our News page for more details.

A press release in February claiming the effectiveness of this drug as a replacement for Sunitinib appeared to be premature at the time. However subsequent news may be more encouraging! See our News page for more details.