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

Steve's Story

I am now 60 but had my first run in at 43.

I was taken into John Radcliffe in Oxford with suspected Appendicitis. It turned out to be a tumour on the bowel which was cut out. This was in 1998. The Tumour was sent to America for analysis and the report came back as a GIST. After recovery from the operation I was sent to Oncology at the Churchill and was told no treatment was required.

Over the next 5 years I was regularly scanned, decreasing the amount of scans until at year 5 I was told I was free of disease. In 2007 we moved to Lincolnshire. In 2009 I thought something was wrong as I had a pain so my doctor sent me to Boston and I spent the day being looked at. I raised the subject of my Gist but the doctor dismissed that, telling me it was a hiatus hernia. On my insistence I was ultra scanned which revealed something wrong with the Liver. Again I was told it could not be GIST as it does not effect the Liver. I was diagnosed with a complicated Cyst and sent home. This caused a delay in my referral for a CT scan but once that was done I was quickly referred to Nottingham Queens and operated on with a two thirds liver resection. .

After a week at home I developed an infection and had to spend another week in hospital. Last year another tumour was spotted on a CT scan, but a bigger tumour was missed outside the liver. Luckily the surgeon at Queens referred me to a PET scan and it was picked up. Both were operated on. Now I have another tumour, grapefruit sized in the intestines which I am scheduled to have out on the 29th at Addenbrookes. I have a list of problems that I have in my care but now I am in the hands of Dr Bulusu I feel more confident. My GIST is wild type.


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If you missed our Cardiff meeting 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>>>.  

Michael Sayers...news

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

Forthcoming Patient Meetings


  • Thursday 7 December in Edinburgh
  • Friday 9th March 2018 in London
  • Friday 5th October 2018 in Manchester

More information will appear on this website in due course.

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.