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


It was September 2003. I had been married one month. I started feeling queasy in my stomach - nothing unpleasant but nonethess persistent. After a couple of weeks of nagging, I eventually took myself off to the doctor. He prescribed something for stomach acid. As I was about to leave, he added, as an after-thought, that I should have a blood test. This was because I had told him that I was getting tired a lot. So he gave me the blood test kit and I left.

I started taking the stomach acid pills and was pleased at the relief they gave me. I also went to have the blood test. A day or so after the test, I was in the office (it was early evening) when the phone rang. My wife, Audrey, told me that there was a message on the answerphone from my GP telling me that I HAD to go and see him in the morning. My blood count was so low that I had to be suffering from internal bleeding. This was early January 2004. I left an email for my boss, telling her what had happened and that I would not be in the next morning.

My GP set me on a course of referrals and tests (endoscopy, etc). Clearly something was wrong but there were no actual signs of internal bleeding. During this time, I was suffering severe sickness and was twice taken to A&E by ambulance. Eventually, the hospital consultant who was co-ordinating the tests, had me admitted to Mayday Hospital, Croydon, for a week of observations, and it was during this week (in the lead up to Easter) that they finally found that I had a "lesion" in my intestine. I was told that they were not sure what it was but that they were in consultation with the Royal Marsden Hospital. I was, of course, offered cancer counselling, even though I had not yet been diagnosed for definite. While I was grateful for this - and relieved that something h ad been found, I preferred to wait until getting a formal diagnosis.

About 3 weeks later, my consultant confirmed that I had GIST and referred me to the Royal Marsden. In response to my questions, he told me that, without treatment, the tumour would kill me in a maximum of 6 - 8 years. So I agreed to treatment.

A CT Scan revealed that I had a small tumour in the jejenum (just below the duodenum) and a larger, secondary tumour in the liver. I was immediately prescribed Glivec, initially at 200mg per day then 400 mg. The local PCT approved this and I commenced taking Glivec in June 2004.

At first, it was OK. I had some sickness and diarrhoea. However, it was only a couple of weeks later that I started getting severe muscular pains in my legs and sore feet. It was so bad that one day I could not bear to stand. My doctors agreed to see me urgently and Audrey took me in a friend's wheelchair from Croydon to the Marsden, via tram, train and taxi. I was given Ibuprofen to take along with the Glivec and this made an enormous difference. After a few days of taking both, I felt safe enough to stop the Ibuprofen and kept taking the Glivec. The side effects settled down and life became relatively tolerable. I was basically now on a regime of 3-monthly CT Scans and 3-months supply of Glivec.

The scans revealed that everything was going well. The tumours were both shrinking and the upshot was that, in May 2005 I was admitted to North Hampshire Hospital in Basingstoke for liver surgery by Mr M Reece. (Not sure if that's the correct spelling). He was absolutely brilliant. Extremely confident that he could successfully remove the liver tumour and promised to have a go at the one in my jejenum as well. The day after major surgery, he came to see me. He had got both tumours clean out! Had I not been bed-bound and connected to myriad tubes, I could have kissed him! After a further 7 days in hospital, I was allowed home and began the long, 3 month path to recovery from the surgery.

I had been taken off Glivec about 2 weeks prior to surgery, so as to enhance the chances of removing the tumours. After discharge, I was put back on Glivec, again at 400 mg per day, to help prevent recurrence. I was also put back on a regime of 3-monthly CT scans.

The scans were all clear. In January 2006 I was taken off Glivec and quickly felt better than at any time in the previous 2 1/2 years. The scans in April and July 2006 continued to be clear and the doctors were telling me that they had hardly ever seen such a good response. All the more disappointing then, when the October scan revealed a small recurrence in my liver. I was back on Glivec (again starting on 200 mg then moving up to 400mg). I anticipated the same sequence of severe side effects followed by milder ones. Maybe because this time I decided to take it with my evening meal rather than breakfast, this proved not to be the case. The side effects have been mild from day one. The CT scan results show that the tumour is "suffering" and the doctors could not be more pleased with how things are progressing. They assure me that I could safely stay on Glivec for years, although they will keep me on 3-monthly scans for the foreseeable future.

I am very encouraged by your website and the opportunity to have contact (at long last) with other people who have the same illness. I hope that you plan to have another meeting soon and would, of course, be very interested in attending.

I am a 55 year old man living in Croydon and am fortunate enough to have been given medical retirement on the same terms as if I had retired at age 60. In a strange way, I feel lucky to have this particular kind of cancer as the treatment has been so good. I feel I have a lot to look forward to - not the least of these is seeing my 6 year old daughter growing up.

Michael Sayers


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.