Things to Read...


We have a number of publications available which you may find helpful. Most are in the form of PDFs which can be downloaded. Alternatively you can email us at and ask for a hard copy. A donation towards the cost of postage would be welcome!

GIST For Beginners (2017)
  This booklet is an introduction to GIST. It explains what GIST is, how it is diagnosed and what the possible treatments are.  The printed version is obtainable from GIST Support UK. Download
Eating after GI Surgery for GIST
  This is a booklet prepared by GSUK on coping the with problems of eating after stomach surgery. It is based on the experience of GSUK patients. Download
No Stomach?
  This booklet is intended for patients who have had a total gastrectomy. It may feel rather a daunting and negative assessment of life after removal of the stomach, but we know a number of patients who have learnt to manage this very well, and continue to lead normal lives. It is probably useful to read this in conjunction with the above booklet "Eating after GI Surgery for GIST" since that covers things not mentioned in this booklet. Download
I am a GIST Patient
  This is a useful little pocket book in which you can record details about your GIST and any medication you are on. It is intended for use in the event of a medical emergency. It has spaces for the name of your oncologist, the drugs you are on, etc, and lists the drugs to be avoided if you are on Glivec or Sutent. The booklet is a translation from the German of an equivalent booklet produced by Das Lebenshaus. Available by post only
100 Questions & Answers about Gastrointestinal Stromal Tumor (GIST)
  By DeMatteo, Symcox and Demetri (ISBN-13:978-0-7637-3838-9/ISBN-10:0-7637-3838-7). Although this book has been written very much with an American readership in mind, it nevertheless carries a lot of very helpful information about GIST and its treatment. GSUK does not keep copies but you can order it through any good bookseller. It costs about £10. Available from book sellers
GIST Support UK Publicity Leaflet
  A leaflet telling you about GSUK. For distribution as widely as possible, especially in hospital out-patient departments. Download


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.