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

Adrian's Story

I seem to have had a better experience than most.

My problem was discovered at Easter time 2002 when I had appendicitis. A routine ultra-sound scan displayed irregularities in my liver. Were they birth marks, scarring tissue or what? This led to a CT scan which confirmed the liver problem and identified a tumour in my stomach about the size of my fist.

A subsequent biopsy eventually concluded GIST with secondaries in the liver and following further surgery in Liverpool in May, to explore the lower bowel and find the route forward, I was advised I was a good match for Glivec.

Medication began on 31st May (400 mgs/day) which was stepped up to 600/day on 19th July. This dosage continued until 9th October 2003 when the medication stopped prior to major surgery on 22nd October. During my time on Glivec, side effects have been minimal. These have been confined to periodic weariness and some dry skin, both of which I coped with without difficulty. I have suffered no pain.

The first routine scan after I commenced taking Glivec indicated significant reduction in the stomach and liver tumours (c25% as far as I recall). The second and final scan, I was informed, showed a marginal reduction in the stomach tumour. A subsequent, welcome surprise then came when the surgeon, who would eventually operate on me, revised
his opinion regarding my liver. He advised in fact that no reduction seemed to have taken place with the liver tumours/markings and it was now his view the initial thinking may have been correct and a 50/50 chance existed that the liver may, after all, be healthy and the damage may, all the time, have been simply birthmarks.

He also advised the present medical thinking with Glivec was that its effectiveness in reducing tumours "plateaued" and the time had arrived for surgery.

Surgery was aimed at removing the affected part of my stomach (and liver if necessary). Any damage to my liver would be assessed during surgery by sending samples to the Pathology Department for analysis.

I awoke from surgery to be told there was a good chance all the stomach tumour had been removed but all the stomach had gone with it due to difficulties in working around a main artery. The appendix had also gone (good riddance) and the liver, on the face of it, seemed OK.. No secondary cancer although a few apparently unrelated puzzles which were being examined.

At the time of writing this, I'm 16 days post operation. I'm able to take exercise (and doing so) and drive my car for a short distance. I'm eating solid food -porridge, bananas, fish, biscuits, custard, a meat sandwich yesterday and drank a pint of Guinness today. It's a "suck it and see" process at the moment but I seem to be coping well enough as long as I don't push it. I am pleased with the surgical outcome, hoping for the best and trying to move forward.

My original weight (about 88 kilos) has dropped to about 80 and seems to be settling at about that figure. I am 6'2'' tall

I realise I have probably been a lot more fortunate than many others. Firstly, by pure accident, I was discovered relatively early when appendicitis was diagnosed and a routine ultrasound scan was performed. Secondly, if I hadn't had "freakish" birthmarks on my liver, the original CT scan, which led to discovery of the stomach tumour wouldn`t have taken place. Thirdly I was a good match for Glivec which, in my case, produced minimal side-effects. Finally, after getting over the initial shock of discovering I had cancer I had plenty of opportunity for discussion, rationalise my thinking process and get as fit as possible prior to surgery which was a worthwhile investment. I've also had fantastic support from my family and friends and a great medical team to help me.

Some final comments which I have gleaned from the medics along the road and which may be worth bearing in mind for others are:-

Avoid CT scans while on Glivec. MRI scans are OK.

Ceasing to take Glivec about 14 days prior to surgery apparently assists the healing process.

Glivec seems to make the cancer site somewhat "mushy" and ill defined which probably does not help the surgeon during surgery. What the impact of this may be, I don`t know.

Glivec remains, at present, an experimental area with plenty of unknowns.

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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.