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


Early in September 2002 I visited my GP as I had been suffering from a slightly upset stomach on and off for a few weeks and I had also noticed a lump that was "coming and going" at the left hand side of my abdomen. My GP referred me for an urgent ultra-sound scan. The alarm bells immediately started ringing at that examination and the person who conducted the scan told me that I had a problem with my left ovary. My GP referred me post haste to a consultant gynaecologist who advised me that the large mass (20cm x 16cm) reported at the ultra-sound was probably an ovarian tumour but there was just a slight thought that it could be related to previous surgery on my bowel (I had an intussusception repaired in October 1980) but an MRI scan would confirm what was happening. The MRI scan took place and I was phoned up the next day and asked to return for a further scan. The consultant radiologist explained that she had been asked to report on what was thought to be an ovarian tumour but she was not satisfied that the scan supported this.

After further extensive scanning the consultant told me that she did not know the source of the tumour but it was wrapped round my spleen and my left kidney, it was squashing my lungs and also pressing on my left ureter - in fact she said it was "pretty crowded in there!" Before surgery, which took place six weeks after the scan, I was advised that my spleen and left kidney might have to be removed and there was a possibility of damage to nerves near my spine.

While I was waiting for surgery the tumour continued to grow (I am a very slim and it was possible to see the extent of the tumour). In the event a tumour weighing 6lbs was removed from my abdomen and my bowel was resected in three places. I returned home 9 days after surgery - having lost a stone in weight and gained a dose of MRSA. When I attended for my first Out Patient appointment five weeks after surgery the consultant explained that the tumour was a GIST. He referred me to an oncologist regarding possible use of Glivec but the oncologist explained that it would not be appropriate to give me this drug unless there was any sign of disease (all the tests indicated that the surgery had taken care of everything). My continuing care was to be handled by the consultant surgeon.

I recovered well from the surgery and by May 2003 was well enough to start some light exercise. I had MRI scans in March and August 2003 which were clear. I retired from work in November 2003 and life was going along really well until earlier this year.

I went for a routine checkup MRI scan in mid-February and learned subsequently (9 weeks later in fact and though profuse apologies were given no proper explanation for the delay was forthcoming) that I should have been called back urgently. The scan revealed that I had a recurrence of GIST at two places - in my liver and an area near my stomach (all very small). My family and I, were all absolutely shattered by the news. I had been so well since the operation and had had no signs that anything was wrong. I was doubly angry about the delay in getting the news, as not having heard anything within 10-14 days of having the MRI scan I had fallen into the "comfort zone" of believing that I was A1.

Obviously I was re-referred to oncologist I had seen previously and was immediately prescribed Glivec - 400mg daily. So far I have taken Glivec with no ill-effects (I read all the helpful advice from contributors re taking the tablet with plenty of water, etc) and a CT scan in September showed that the tumours seem to be shrinking. I am due to have another scan in a few weeks.

The high levels of radiation associated with CT scans does concern me but what choice is there? My oncologist also tells me that the health authority here does not like patients to be given more than 4 weeks supply of Glivec at a time so it is rather a drag having to attend Out Patients once a month. However I managed to negotiate six weeks between the October and November appointments, and the imminence of the festive season has given me a seven-week breather before I have to go again.

I feel a bit of a freak sometimes but am more grateful than I can ever say that Glivec is available.

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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.