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

Colin's Story

I had a very active youth, and then spent 17 years in the army.  Then I got into the business world, and took up running marathons.  This April, when preparing for another marathon, I found I could hardly run at all. I gave myself a week’s break and the same thing happened.  I knew all was not right.  I had a busy week, so decided when that was over I’d call the doctor. 

He was a new doctor. I had seen the previous doctor a year previously about a pain to the left of my chest but he didn't think there was anything wrong.  This time, the new doctor asked for a blood test.
It was 6.30 Friday evening and the telephone went. It was my doctor.  He said I was very anaemic. I was losing blood but from where? I told him that I coughed up blood a few weeks ago but it wasn't much so didn't think too much about it and then remembered that my stools were black. He said I should go to hospital as there is something seriously wrong. I persuaded him to leave it until Monday.  Then I had a blood transfusion  I felt fantastic afterwards but had to have iron tablets to assist the red cell count.

I was still working but my doctor organised an endoscopy for me at Kettering hospital. This took place within a few weeks. The nurse said that I had an ulcer in my stomach. I felt relieved as I thought it would be sorted out very quickly.
I was told to come back in 8 weeks to see if the ulcer had disappeared, and they gave me a set of tablets. So I went home with iron tablets, anti ulcer tablets, and salt tablets as my salt was low.

8 weeks passed and I had heard nothing. I called the doctors and told them I should be having another endoscopy. They had forgotten, and then arranged for the second one to be done.  This time the camera was down in my stomach for what seemed ages. The ulcer was still there. The nurse told me I would have to up my dose but I told her that I was already on the maximum.  She then decided that I would need to have an urgent CT scan. After the scan I was told that it might be weeks before the results came in.

We had a very good Help for Heroes evening raising £2000 in September, in preparation for my next run.  However, later that month I had a letter from Leicester Royal Infirmary General surgeon. They wanted me to go for a meeting 3pm on a Friday. I feared the worst but I had still not been diagnosed with anything. I also received a letter from a consultant in Kettering hospital who wanted me for an appointment on the same Friday around 11am.  I went alone to Kettering hospital and saw the consultant. He explained that I had a GIST which was growing in the wall of my stomach and drew pictures etc. He gave me the Macmillan card and asked if I wanted to see them in the next office. It didn't sink in at this point. He mentioned that I would have a to take some chemo tablets and that I would need surgery. I finished there and went straight to Leicester Royal Infirmary for my meeting with the general surgeon. I felt like crying like a baby on my way to my car but held back making light humour with myself saying I would need a hat to cover my bald head of I lose my hair.  The meeting went on for an hour and a half and I met with 5 people who discussed the tumour and the surgeon explained what he would do.

My operation, which lasted 8 hours, took place on the 30th November 2009 on a Monday morning. After a day in recovery, I was in a ward wired up to the hilt and with over 30 staples pinned down the front of my stomach. I was not allowed to eat or drink until the Friday.

The surgeon visited me and said he was sorry but he couldn't remove the GIST via keyhole surgery and had to make the cut. It was the size of a golf ball, and a biopsy showed it was active with a good chance of it returning. He said he had removed 80% of my stomach.  I left hospital on the Sunday and spent time at home.
I took Glivec tablets for 12 months.  I still had to take iron tablets and salt tablets, and initially tramadol to ease the pain.

The first year I had blood tests every month and appointments with my consultant, moving to 3 monthly and now 6 monthly, complete with CT scans.  I returned to work on the 30th March, having had issues with my then employer about being off work, and I also started my training again, as the marathon was in late 2010. I did the run and have since done another for Help for Heroes in October 2012.

So far things have been fine with no issues etc and results of CT scans have been clear.
I am not taking any medicine and things are going very well.

Colin Budden

Click here to return to top of page

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.