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

Terry's Story

I was diagnosed in December 2004 at Peterborough District Hospital, following treatment for severe anaemia. This was caused by a Gist tumour rupturing in the stomach wall, and I had experienced no symptoms other than the anaemia. I had a partial gastrectomy in January 2005 to remove the primary tumour and a small metastatic tumour in the liver. The operation was performed by an upper gastric surgeon who fortunately at least knew that Gist existed and that clear margins were essential. Peterborough had electronic contact with the regional centre at Addenbrookes Hospital in Cambridge, who were able to confirm that the tumour was a Gist with Exxon 11 mutation and a high risk Mitotic rate. At that time I had no further treatment but commenced my 3 monthly CT scans following advice from Cambridge.

In October 2005 a CT scan showed metastatic Gists in the right lobe of my liver and I transferred to Cambridge under the care of Dr Bulusu, a Gist specialist (exclusively), and he immediately prescribed 400mg Glivec daily. Side effects were severe “itchy” rash over most of my body and the dosage was reduced to 300mg daily which was very effective in controlling the liver tumours and without side effects. After a PET scan in March 2009 showed no active tumours in the liver, I underwent a liver resection in June 2009 to remove two tumours, and open surgery RF ablation on one tumour (not recommended). Surgery was carried out by Addenbrookes’ specialist liver team, and the liver grew back within 3 months or so. I was now NED for the first time and Glivec was discontinued.

In December 2009 a routine CT scan showed a new Gist in the left lobe of the liver, and 300mg Glivec was immediately resumed. It quickly began to control the tumour, but in Oct 2014 a PET scan showed that whilst most of the tumour was inactive, there was an active site in its centre.  A further liver resection was recommended and carried out in January 2015 at Addenbrookes. It was successful and I am therefore again NED. However Dr Bulusu, who I believe is arguably the best informed Gist specialist in the UK, sent off all of the tumour specimens for full mutational analysis, and his suspicions have been confirmed, and the decision to carry out the last liver resection fully justified. The analysis showed that the bulk of the tumour was “dead” and was still Exxon 11 like the earlier tumours. However the centre of the tumour was still active but Exxon 13 which was a new mutation but more importantly resistant to Glivec. In other words had I not had the last liver resection I would by now be dependent upon Sutent at least to control the new metastisis, with all of the new, for me, side effects.

It has been suggested for some time that there was a possibility of two different mutations existing on the same site, but as far as I am aware it has not been confirmed elsewhere, but I am open to correction.

So why this long history, which I am placing on the website, now? I believe that you all might like to think about the following comments as you continue your battle with Gist.

At all times stay positive and keep fighting, because new treatments are coming along all the time, and 10 year survivals are no longer as rare as they were in 2004. However, make sure you are treated by a well informed Gist specialist, and transfer to one if in doubt.  Until that elusive cure is discovered ensure that you have at least a 3 monthly, or 4 monthly, or at worst 6 monthly CT scan. Tumours are easier to control in the early stages. If you are worried about CT scans, they are much safer than they were, but you must trade off the slight but finite radiation risk, against possible multiple operations to remove advanced metastatic tumours..

If you are NED, do not be complacent, and think carefully before you stop taking your medication. You may avoid further surgery later by taking the pills.

Keep fighting Gist because it is not just one disease but exists in many mutations, including wild type, which may react to different medications. At present we are all still buying time until that elusive cure comes along, and thankful for our survival so far. .

Never forget that having a Gist does not mean that you are immune from other diseases. You still have to fight them as well, and with a weakened immune system. That’s what I am doing right now, and so far I think that I am winning.


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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.