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

Dexter's Mum's story

She was diagnosed in October 2007 following a MRI scan with a tumour which measured 19cm by 10cm.

Her diagnosis took an extremely long amount of time and provides a cautionary tale about the lack of awareness of GIST amongst GPs. She had originally approached her GP about a year prior to being diagnosed as she was feeling lethargic and tired, which gradually got worse over the year. She was diagnosed with anaemia and prescribed iron tablets. This continued for some time and it became increasingly obvious that they were not doing anything to reduce her symptoms. Further tests showed an improvement in red blood cell count but crucially not in the white blood cells. She was then referred to a specialist to find out why she was either not absorbing the iron or absorbing but then losing it.

Throughout this year, her appetite slowly disappeared and she noticed that she was losing weight and her stomach was increasingly bloated. She repeatedly went back to the GP who sent her for further tests which included an endoscopy and colonoscopy and others; they were all negative. She was finally referred for an ultra-sound, followed by an immediate MRI scan when she was told that she had advanced ovarian cancer. This news obviously came as a complete shock to her and she informed family and friends, who did some research which provided grim prospects. A biopsy was taken and she eventually found out that this was a misdiagnosis and she in fact had GIST which had metastasised to the liver.

She was put onto Glivec in November 2007 and has been on it since. She has been very fortunate in that her tumour continues to shrink and now measures about 1cm. The metastases on the liver are dormant and inactive. Her side effects with Glivec were originally quite severe with swelling of her ankles (she still gets this but to a lesser degree), nausea and fatigue. She does still feel tired sometimes but is not sure whether this is the drug or just her hectic life! She works full time and often attends the local gym for various exercise classes.

When she was first diagnosed, she was very underweight and needed desperately to build her strength up. Her children devised a diet for her which was varied but also designed to put weight on. This interest developed into a passion and what she now eats and drinks is almost exclusively organic, always home cooked food from scratch with an almost complete ban on sugar. This is topped up by lots of green tea and wheatgrass. Gone are the days where she would have a low fat ready meal for a quick dinner-now it is an organic homemade soup made on the weekend! Neither Mum nor myself are qualified to say that any of this has had an impact on her positive results with Glivec but we do know that the medical profession are largely at a loss when trying to describe what she should be eating apart from saying she should be having a "balanced diet".

I think her new view on food (we hate the word diet!) was a way in which to take back some control when we felt lost and helpless when first diagnosed. Finding GIST Support UK has also been a wonderful source of information and support, as have the online messages from the GIST community and we wish you all the best!

Posted: 07/02/2011

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.