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

Paul's Story

This is a deliberately upbeat story because, for now at least, I am one of the lucky ones.

Diagnosis of my GIST followed a holiday in May 2009 during which I started to feel very lethargic. Initial symptoms of breathlessness while walking uphill on Mt Etna developed to the point where even the hotel staircase was a struggle! On returning home, I proceeded rapidly from my GP to the local A&E, where various tests were followed by a blood transfusion to replace 2 units and counter my anaemia. Three days later, an endoscopy revealed a tangerine sized (7cm) tumour on the lesser curve of my stomach. So, at the age of 55 with no previous medical history, I was about to experience in-patient hospital care and some fairly major surgery.

Fortunately, I was referred to the Royal Marsden Hospital for surgery by Mr Jeremy Thompson in June and subsequent oncology care from Professor Ian Judson’s team which specialises in sarcomas. Recovery from keyhole surgery was thankfully rapid – I was home within 5 days and back at work after 6 weeks. Subsequent pathology results revealed a wild-type GIST with a fairly high mitotic rate. Quarterly scans for the first year were followed by 6 monthly scans in year two – all of them clear. Along the way, a bout of gastro-enteritis 5 months after surgery cost me in 5 days the half-stone in weight I had regained since leaving hospital! So it took almost a year to return to my original weight of 12 stone/75kg but I was fortunate to retain 95% of my stomach after surgery and I have not needed any on-going drug treatment so far.
The psychological recovery from any cancer diagnosis can be as challenging as the physical. However, right from the start my aim was to regain the way of life I had enjoyed before my illness. This included a return to various sports – squash, league hockey and occasional mountaineering. After a year at work and the move to bi-annual scans, I decided to take early retirement, aged 57. With the odds of relapse set for me at 55%, I wanted to make sure that time spent in good health would include some “quality time”, well away from work!

So, in the three and a half years since surgery I have been fortunate to travel extensively, regain my previous levels of fitness and step off the work treadmill, all without suffering further symptoms. In short, I have been very lucky – so far. I accept that with a GIST diagnosis, I am unlikely to be signed-off completely but annual scans are not a problem. I just have to be vigilant for any signs of relapse.

Needless to say, I am eternally grateful for the excellent care I received from staff at the Royal Marsden and the wonderful support of my family. The NHS – in which I worked for 35 years – certainly provided good quality care for a serious illness when I needed it most. This included access to specialist sarcoma treatment which only the NHS can provide.

The one other point I would make with the benefit of hindsight is to keep looking for the positives. Initially this can be really difficult as you work your way through the shock of diagnosis and the anxieties about treatment and post-op recovery. But regaining control of your life is a powerful motivator, along with having targets to aim at. Standing on top of  the mountain in the attached photograph was a very rewarding moment after the turmoil of the preceding 18 months.

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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.