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

David Round's Story

The diagnosis of my GIST was, like that of many other people, as a result of investigations into another unconnected condition. In February 2004, at the age of 44 years, I was diagnosed with GIST. At the time I had a young family of two daughters who were aged 8 and 2 at the time and I lived in the West Midlands (Wolverhampton).


In my early 20s I had developed a relatively mild case of "Ulcerative Colitis", which is a benign but chronic condition which gives rise to rectal bleeding and diarrhoea etc. However, this was readily treatable with drugs when I had a relapse and, in the main, I had few problems.


However, in the summer of 2003, I had a bout of UC which was treated in the normal way with anti-bacterial and steroid drugs. Unfortunately, this episode dragged on for some 6 months until I was finally referred for an Endoscopy examination which took place in January 2004. This revealed what the Gastrointerologist consultant at my local NHS Trust described at the time as being a large "polyp" about the size of a conker in my large bowel (colon). They took away biopsies for testing from the polyp and arranged another appointment for about a month later. However, when I went to my GP and asked whether he had received the results of the biopsies, I was able to read that the Consultant had written to my GP saying that although he had told me it was a polyp, he feared that it was a bowel cancer.


When I went for my follow-up appointment with my GI consultant he told me that the so-called "polyp" was, in fact, a Gastrointestinal Stromal Tumour and that it was "benign". However, he did add that they couldn't be certain of the diagnosis until they removed the whole of the tumour and did full histopathology tests on it. The treatment that was recommended by the multi-disciplinary was surgery to remove the tumour but also, because of the instability that had been caused to my tissues by my long-standing ulcerative colitis, they recommended that I have a pan proctocolectomy procedure which removes the whole of the colon and rectum and forms an irreversible ileostomy stoma to remove waste. This is a pretty major surgery, as you can imagine, but it did seem to offer a "cure" (although I have likened it to a decapitation for treating a headache!).


I was referred to a colorectal surgeon some 2.5 months later (too long in my view) and we discussed surgical options. Her recommendation was the radical surgery option because it offered the best prospect of removing all of the GIST (which at the time I still thought was benign), "curing" the colitis and offering the fewest potential complications. I had my surgery a couple of weeks later and woke up with a delightful ileostomy bag attached to my abdomen!


In fact, I did recover quite quickly from the operation and I left hospital after a couple of weeks, returning to work 2 months later. About 6 weeks after surgery, I had an appointment with my oncologist who, confirmed, for the first time that the tumour was malignant. The tumour they had removed from the lower part of my colon was 3.3cm in size with <5 mitoses (cell divisions) per 50 high powered fields and with no evidence of necrosis (cell death). They also removed 23 lymph nodes which were all clear (interestingly enough GIST rarely spreads via the lymph system so removal of lymph nodes isn't thought important by GIST experts apparently). The Oncologist explained that GIST is a rare cancer (he had only seen two new cases in the previous 12 months) and that, on the face of it, the surgery was successful with clear margins. He suggested that the cancer was a low/intermediate risk, appeared non-aggressive, with an estimated 70% or so 5 year recurrence/survival rate (there was some ambiguity over precisely what was meant here?) . However, as he so graphically explained with a blank piece of paper and a pen, there might be thousands of GIST cells in the body that they had no way of identifying and which might seed and cause a recurrence!


The location of my GIST in the colon apparently is predictive of a less good prognosis that gastric (stomach) GISTs and less than 10% of all GISTs are located in the colon compared to 50% in the stomach and 15% in the small intestine.


I wasn't put on Gleevac as the view of the consultant, which broadly remains the consensual view at the moment, is that there was no evidence that adjuvant therapy was effective with apparently successful GIST resections. However, he would use Gleevac if it did recur or metasize (spread).


I have had a number of interesting discussions with my Oncologist and his junior colleagues since then mostly concerning questions of whether or not to perform routine CT scans. At first, his position was that there was no evidence that regular CT scans for GIST saves lives and that there is heterogeneity of views on the matter from the experts. Practice does appear to differ in the UK compared to the US, where regular 3 month or 6 monthly scans are routinely offered. As I knew that recurrences/mets of GIST occur most frequently in the liver, I asked what symptoms to look out for. I was told by one junior member of his team to look out for "changes in bowel habit" (bit difficult really as I don't have a bowel anymore!) or loss of weight and appetite (by the time this has occurred, however, the cancer will probably be quite advanced anyway). The symptoms associated with liver mets are apparently "non-specific" which didn't really help very much!


As you can see, I wasn't entirely comfortable with the approach that my cancer centre took. However, I have been able to cajole the surgeon who did my operation to order a scan and I had a 12 month scan a few months ago, which was clear. Since then, I have been able to persuade my Oncology consultant to order 12 monthly scans and he has now said that I no longer need the 3 monthly appointments which mostly took the form of "how are you" and a quick poke and prod which probably wasn't very useful in reality. He has assured me though that if I have any concerns, to contact the centre and that they will see me immediately.


My general health since the operation has been good. I have been able to return to full time work (good job really given that I have a young family and mortgage etc.!). I have resumed running and have completed half marathons and 10k runs. The ileostomy generally works ok but I have to say that I seriously under-estimated the psychological and emotional impact of having a permanent stoma. That together with the actual cancer diagnosis itself has led to problems of depression and considerable anxiety. I was surprised when I was diagnosed with GIST that no psychological and emotional help was offered and I had to battle for a good 12 months before being referred for counselling support on the NHS.

Update: September 2009

Sometime in 2007 (I think), one of regular CT scans showed up what the Oncology team described as 'uncharacterisable' spots on one of my lungs which didn't seem to be changing in size. However, as a result of this, it was decided to increase my CT scans from 12 monthly to 6 monthly. I continued having 6 monthly scans which showed no change. However, the surgeon who did my original operation expressed concern about the need for such regular scans (high radiation exposure) so she arranged for me to have a PET (Positive Emission Tomography) scan at our nearby teaching hospital. This technology is very new in the UK as the machines are massively expensive and they are only now available in a number of main regional teaching hospitals.I therefore had to wait about 6 months for the appointment. As I understand it, the PET scan works by providing images of how an injection of glucose, which incorporates a radioactive tracer, is taken up by cells in the body. In principle, misbehaving cells such as cancer cells which are dividing abnormally and faster than is normal, would take up the glucose differently than a normal cell. The scan itself is quite a scary experience with the radiologist entering into the room holding a lead-sealed box which contains the glucose radioactive injection. You have to remain perfectly quiet and still for an hour whilst the injection is taken up into the body and then remain in the scan machine for about 30 minutes.

I received the results of the scan from the oncology team who reported that although the scan showed nothing abnormal on the lungs, they did see evidence of 'hot spots' in the stomach which could indicate a tumour. An endoscopy to look into the stomach was therefore requested. However, getting an endoscopy appointment isn't always as easy it you might like and in my local hospital, there was something like a 3 week waiting time. One of the disturbing features of the NHS is the fact that if you are articulate and pushy, it is often possible to fast track rationed procedures. I emailed the surgeon who did my original GIST resection and she offered to add me to her Endoscopy list the following week. Prior to doing the procedure, my surgeon (who is excellent) said that in her view PET scans often give 'false positive' readings as they are so sensitive to things like inflammation etc. The endoscopy wasn't fun but it revealed inflammation of the duodenum which is now treated with drugs.

I have also had a spell in hospital for a blockage in my ileostomy which was a scary experience as the pain was considerable. This was caused by adhesions from the original cancer surgery and is fairly common.

At my last Oncology appointment, I asked some further questions about the original histopathology report which revealed that the mitotic rate was higher than I had originally been told (or had heard!). They now said that it was higher than 5/50 which obviously increases the risk categorisation. However, I intend to check this at my next appointment as I am sometimes not confident that what you are being told is accurate when speaking to junior members of the Oncology team.

It is now 5 years after my original diagnosis. So what does this mean? I have asked this of the medics and because their experience of GIST is limited, they tend to give generic answers. However, I think I understand that although the risk of recurrence declines after 2 years, the risk never disappears completely and GIST can be very unpredictable in terms of prognosis. At this moment in time, as I approach 50 years of age, I am in remission.

David Round

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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.