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


Late one Friday evening in April 2011 a severe rectal bleed meant an emergency admission to the West Suffolk Hospital (WSH). The bleed continued intermittently for over two weeks and during this period chronic anaemia necessitated the transfusion of 31 units of blood! During this period a healthy appetite was maintained, which is normal for me, and there was no pain what-so-ever, much to the surprise of the nursing staff. Endoscopic investigations into the stomach and through the rectum around the colon failed to reveal the site of the bleed. Fortunately, as quickly as the bleed began, it stopped, and after a further three days I was discharged.

As part of the NHS follow-up investigations a capsule endoscope (pill camera) was swallowed at The Norfolk & Norwich University Hospital in June 2011 to look particularly at the small intestines which were inaccessible by the equipment at the WSH. The results from the camera's six to eight hour passage through the stomach and gut are relayed to a recorder worn around the waist. Once the camera, the size of a 'gobstopper', has been swallowed, the patient can continue with their normal daily routine, returning the recorder to the hospital that evening or the following day. The camera is subsequently excreted and does not require recovering.

The only significant sighting from the camera was a cluster of small blood vessels at the far end of the small intestines which could suggest an abnormality on the outside and were probably the cause of the initial bleed. Holiday delays meant it was late August 2011 before a further CT scan could be arranged at the WSH and this showed a growth the size of a small hen's egg (40mm x 30mm) attached to the small bowel. Mr Dermot O'Riordan, Consultant Surgeon at WHS, was keen to operate, so 7 days later I was admitted and in a 45 minute operation, mostly key-hole but with a small 5 cm incision, the tumour and 45 cm (18 inches) of small intestine were removed and sent for biopsy. I was discharged from hospital 48 hours later. The initial biopsy results were inconclusive, so the growth was then dispatched to Addenbrooke's Hospital who diagnosed a GIST and this was confirmed by a specialise unit in Birmingham, after-which Mr O'Riordan referred me to Mr Bulusu at the specialist GIST oncology department at Addenbrooke's.

Since then there have been a further three CT scans at 4-monthly intervals and each of these has been clear. So far I've been fortunate in that the GIST was discovered and removed at a relatively early stage, due largely to the diligent observations of Dr Crawford Jamieson who reviewed the pictures from the capsule endoscope. As the risk of a GIST re-developing has been assessed as 'low', I've now been moved to 12-monthly CT scans but with 6-monthly blood tests. Throughout this whole episode I've remained active with generally good health for a 73 year-old.

Posted: 6/11/12

The next PAWS-GIST clinic is happening on Friday 7th December 2018. Registration is via PAWSGISTCLINIC.ORG.UK 

Our next Patient Meetings are in Edinburgh on Thursday 31st January 2019, Birmingham on Friday 8th March 2019 and Leeds on Friday 4th October 2019. 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.