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

What is GIST?

GIST is an abbreviation for GastroIntestinal Stromal Tumour.

  • Gastrointestinal means that it occurs in the digestive tract, anywhere from the oesophagus to the rectum i.e. the gullet, stomach, intestines.  
  • Stromal indicates that the tumours occur, not in the "functioning" part of the organ but in the tissues (the stromal cells) that hold the organ in place in the body. So, for example, a GIST in or near the colon is not "cancer of the colon" because it does not occur in the functioning part of the colon but in the tissues which support the colon. (For reference, the functioning parts of any organ are made up of so-called parenchyal cells).  
  • Tumour simply means that the GIST condition is producing a solid(ish) lump unlike, e.g. leukaemia.

GISTs are malignant tumours of soft tissues in the gastro-intestinal tract (the stomach and intestines). They are a kind of sarcoma, which is a very rare type of cancer. Around about 2% of tumours in the gastrointestinal area are GISTs.

How common is GIST?

There are probably around 900 new cases each year in the UK. GISTs mostly affect people between 55 and 65, but there are GIST patients both younger and older. It has only been possible to diagnose GISTs unambiguously since 2000, and because of their rarity many GPs will never see a case in the whole of their career.

GIST in children and young adults is even rarer. There is now a UK group gathering data on this super-rare paediatric GIST, which does behave differently in some ways from GIST in adults.  (See our section on PAWS GIST).

Possible symptoms

  • Discomfort or pain in the stomach or intestines
  • Indigestion
  • Nausea
  • Swelling
  • Bleeding from the stomach or intestines
  • Weight gain
  • Weight loss
  • Fever
  • Night sweats

Because GISTs do not interfere directly with the workings of an organ, they often grow for some time without producing any symptoms. Even when they do produce symptoms, these are very varied, and all of them can be caused by other things. It is the presence of one or more of these symptoms, which cannot be explained in any other way, which should lead to a possible diagnosis of GIST.

If a tumour is found which could be a GIST, current opinion is that it is probably best to remove the tumour, if possible, without doing a biopsy. Many GISTs are only firmly diagnosed after surgery. They are sometimes found when the patient is being operated on for something else. If it is not possible to remove the tumour, then a biopsy may be done endoscopically. (Using an instrument passed into the stomach or intestines through the mouth, or anus.)


A firm diagnosis of GIST can only be made by a pathologist looking at the tumour tissue with a microscope. There are two main definitive criteria for diagnosis: finding the location of the tumour, and finding a positive c-KIT (CD 117) or PDGFRA enzyme receptor abnormality.

Today the diagnosis of GIST has different implications from those it had even a few years ago.

  • GIST can now be diagnosed unambiguously
  • Scientists' understanding of GIST is increasing daily
  • An operation and/or drugs (Glivec® is the first option) offer genuine treatment options

Other drugs have been developed. 

(See the pages on Treatments and Clinical Trials.)

Things to Read

Visit our Publications page for a list of literature which will help you understand GIST and its treatment.  We would recommend that you start with GIST for Beginners.  This is published by GSUK and gives a good explanation of GIST and the methods of treatment currently available under the NHS.   

GIST Patient Booklet

We are grateful to our member Peter Greenwood for producing this convenient pocket-sized booklet in which you can note 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 your name, 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 based on a translation from the German of an equivalent booklet produced by Das Lebenshaus. For your own copy of the booklet please contact admin@gistsupportuk.com (A donation of £1 would be welcome to cover costs and postage!)


(Page last updated 30/3/2017)

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.