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


It has been 6 years 8 months since I was diagnosed ( May 2009) with a GIST in the wall of my stomach very close to the Oesophagus. It was the size of a golf ball.

This week, on Monday (January 2016) I had the all clear from the hospital and have now been signed off, with the reassurance that I can make an appointment with the Oncologist whenever I deem it necessary. I am a 62 year old retired, relatively fit female who lives a normal life, looking after grandchildren at least once a month, enjoys gardening, walking and go skiing with my husband, twice a year if we can. My present Oncologist has told me that there is no reason to think that a GIST will return.

A brief history leading up to present day (February 2016).

I had held a post of responsibility in a college for a number of years and looking back, I had put up with re-occurring issues with my stomach on a number of occasions, but none that took me to the doctors. I very rarely missed a day off work. On this occasion I had visited the doctor as I was suffering with very severe stomach cramps, had vomited some blood and my stools were black. I felt drained and very weak. My pulse was racing.

My doctor was great. He arranged for me to be seen in hospital immediately. I was given an endoscopy within 2 days which identified the GIST and ulcers which had recently bled. Two weeks later, due to the location of the GIST being so close to the Oesophagus I had a total gastrectomy. My surgeon assured me that as long as I ate little and often I could outlive him. (We were about the same age of 56). After two months, my Oncologist prescribed me with IMATINIB. Two years of the drug was the recommended treatment for Adjuvent therapy to prevent or reduce the chances of GIST cells reforming . NICE allowed me to receive a further year of IMATINIB ( Glivec) because of the location of the GIST and high mitotic rate.

I called this my magic pill.

I didn't like taking it, but eventually learned that it was better to take it in the evening after a meal. With no stomach I had more problems with my diet or at least taking in enough calories to sustain energy. I lost over two stones and subsequently had to buy a whole new wardrobe ( that was a positive!) My employer was very supportive. I was off work for one year and went back to my old position on a phased return. Although most colleagues thought I should have taken early retirement, I wanted to retire 'in good health'. I worked for two more years and retired at 59. It also coincided with the end of the course of treatment: the end of my magic pill, which seemed appropriate. 

My husband has since retired and we have moved house to a new part of the country, where we are nearer our sons and their wives and our grandchildren. Life goes on as normal. I just look a lot thinner, but that has the advantage of being able to climb hills without any problem. ( I've been up Skiddaw since)

My thanks go to all the medical staff for all the professional care and support that I have received in Singleton hospital and more recently at The Royal Devon and Exeter hospital, and to my husband who has looked after me and put up with all my problems during my recovery and subsequent rehabilitation.

(Posted 2nd Feb 2016)

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.