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

Dave's Story

My story is, like so many others perhaps, one of my wife being sure that everything was not OK. In my late fifties, Irene decided that I should make an effort to be fit (the usual reply "fit for what?" didn't work this time); so I decided to walk up four floors instead to my office instead of taking the lift. After about a week of this I was completely exhausted so (again!) Irene sent me to the family doctor to find out what was wrong.

I was anaemic and, if you are anaemic, you are bleeding somewhere and so I was referred to the Royal Hallamshire Hospital here in Sheffield . . . a prestigious medical establishment but a 1960's architectural disaster. One of the things that is not allowed in the Hallamshire is internal bleeding; it is completely forbidden and they are going to stamp it out. So what followed is the familiar story; from beginning-oscopy to endoscopy with no result. So, then it was X-rays in earnest, looking at the small intestine where an ace radiographer noticed a narrowing . I was whooshed off to the ultra-sound scanner and jumped the queue ahead of some startled expectant mothers waiting for their routine scans! Sure enough, there was a golf ball size suspicious object which was the cause of the problem.

Less than a week later (July 1999) I was back in the surgical ward of the Hallamshire having the object removed which turned out to be a GIST. An introduction to abdominal surgery . . . all new to me. Another thing which is not allowed in the Hallamshire is post-operative pain so I was on a self-controlled morphine drip which worked very well but generated some spectacular hallucinations (do people really take this stuff for pleasure?). On day two when one is feeling that perhaps death was the better option, the physios come in: "Hello David (first name terms only in the Hallamshire), time for breathing exercises and a walk" EXERCISES!, WALK!, help.

The surgeon was confident that he had got the lot and there was no evidence of malignancy in the joined region of intestine. I was put under the care of oncology in the nearby Weston Park Cancer Hospital; monthly "how are you" appointments and three-monthly CT scans. During this time Irene found out about Gleevec through a newspaper article so this looked like insurance against a recurrence.

Almost exactly two years later (July 2001) one of these CT scans showed another GIST of a similar size to the first one. So off to the Hallamshire again and Chris Stoddard went in (through the same scar) and, this time, fished out the GIST seen on the scan PLUS five much smaller ones each about a centimetre. I was growing GISTs like other people grow courgettes! Surgery was completely successful with me a lot more relaxed about the whole procedure . . . the experienced patient. Same drill at the Cancer Hospital; a CT scan in September revealed two more small suspicious objects.

This was September 11th (yes, the September 11th) and I was watching the twin towers burn live on TV while waiting for the appointment. So "lets get onto the Glivec trial" says everybody; come back on Thursday (13th) and we'll set you up. Now I knew that the trial closed for new members on September 14th so I was pretty uptight on the appointment on the 13th. My blood pressure was so high that the oncologist was very alarmed.

I got onto the trial and was given the highest dose (by the random choice method) 800 mgms a day. The first CT scan two months later showed some shrinkage of one object and no growth of the other. Next scan showed the shrinkage continuing with one object almost undetectable; the next two scans showed no trace of tumours. In fact, these last two scans had the report "no evidence of abnormality". This is, of course, fantastic news for me and my family particularly since, as the tumours were so small, I had never been actually ill and the whole business had a rather unreal air; friends, family and colleagues kept saying "you look so well".

I am now feeling good, still taking the orange tablets at the high dose. Side effects? Initially, I felt rather tired and often had to have a sleep in the afternoon (I am still working). I have a small problem with slight oedema in the eyes and eyelids but nothing serious. In retrospect, I think that much of the tiredness was delayed surgical shock after talking to some people who have had abdominal surgery for other reasons but this is just conjecture.

What my story shows is:
Wifely concern; don't ignore the concerns of your nearest and dearest!

Early diagnosis means less dangerous surgical interventions.
If you MUST have cancer, Sheffield is a good place to have it; no complaints about the NHS from me.

Glivec is a life-saver.

Update: August 2004

I have now been taking Glivec at the high dose (800mg daily) for almost three years. I am now scanned every four months and have a outpatient appointment shortly after the scan to get the results and another four months supply of Glivec. The side-effects were never much bother and now hardly amount to much: a little indigestion and wind now and then. So, I lead a completely normal life for four months at a time with a few days panic around the scan appointments: GIST patients call this state "scanxiety". I enquired about the possibility of reducing the dose just in case there are long-term side effects but the oncologist said (not in these words!) if it ain't broke, don't fix it. That suits me fine

Mike Leahy gave the GistSupportUK patient group a talk in Leeds which included data that the vast majority of GIST patients taking Glivec found that the side effects decreased with time. I hope that is true for everyone.

Update December 2008

Since August 2006 David has been retired and continues to enjoy life to the full.

With the exception of changing from four-monthly appointments for a scan and a new prescription of Glivec for a six-monthly one, I am continuing in the much same way; that is a completely normal life. I do have a "mild" concern that all the CT (X-ray) scans I have had might have some long-term effect and have raised it with the oncologist but the risk is trivial compared with the risk of a new unseen tumour growth.

I have found, particularly during the last year, that the Glivec side effects seem to be be getting even less; less fatigue, not so many (minor!) digestive upsets and less puffiness round the eyes.

Two grandsons have arrived in 2008, so I have plenty to think about!

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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

  • Friday 6th October in Cardiff
  • 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.

Masitinib
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.