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

SYLVIA'S STORY

At the end of October 2015 I was suffering with a really painful shoulder, and although I hate going to the doctor's and taking tablets, I decided I must pay them a visit.  I was prescribed naproxen an anti- inflammatory tablet, which I started taking immediately.  I carried on with life as normal, but whilst at my weekly Zumba class I felt unwell, left the class and promptly fainted.  I didn't feel well for the rest of the day, but put it down to the tablets, although I had only taken 5.  During the night I got up to go to the toilet and fainted again - something I'm not in the habit of doing.  The next morning I passed a really black sticky stool and realised something was not right. 

It was a Saturday morning and our doctor's was closed, so I went to the walk-in centre, and explained what had happened.  They took my blood pressure, asked how I felt, and rang for an ambulance.  After further tests at A&E I was admitted to the Leicester Royal Infirmary.  My blood count was very low. The following day I was taken for an endoscopy and I was told that something was showing but they thought it was a polyp with ragged edges.  I was then sent for a CT scan which showed up a 7.4 X 7.3 X 7.5 cm gist.  I was prescribed Omeprazole to help heal the abrasion.  My blood count was still very low, so I was prescribed iron tablets and later given a blood transfusion.  I spent 7 days in hospital before being discharged with iron tablets and omeprazole.  I was told I would need surgery to remove the gist.  I returned to see the surgeon Mr Exon in December, who advised that until he operated he couldn't be sure what he was dealing with, and it could result in the removal of partial or 80% of my stomach.  He thought that the naproxen had probably aggravated the gist and caused it to bleed.  I later saw the anaesthetist and he advised that Mr Exon was hoping to remove the gist by keyhole surgery   

I was admitted for my operation on the 3rd February 2016 and operated on the following day.  I was brought round in Intensive Care.  Mr Exon came to see me and told me he had been unable to do keyhole surgery and it had been a tricky operation which had taken 31/2 hrs.  He had moved a 8-9cm gist which had obviously grown since the original diagnosis.  Some of the surrounding tissue had also been removed.  The gist was growing out of my stomach and had attached itself to my pancreas, so 25% of my stomach had been removed and my pancreas shaved.  I was in intensive care for 3 days before being moved to a general ward. 

After the epidural was removed I chose to just take paracetamol for pain relief to see how I got on, as I didn't like the sound of the side effects of  the other pain relief options which had been explained to me.  I was also prescribed lanzoprazole to enable the tissue to grow over the staple in my stomach.  I had a catheter and also 2 drains from my side so they could monitor the fluids.  I found the drains really uncomfortable but only because they are just hanging when you try to move around.  I was discharged after 11 days. 

The first week I was fine but then I began to feel unwell; I had severe pains in my left side and the drain wounds were weeping.  After speaking to the Macmillan nurse I was advised to take buscopan and see my doctor.  The drain wounds were infected, so I was prescribed antibiotics. These seemed to clear the infection, but the wounds erupted again and  I went to see Mr Exon, who applied silver nitrate, which cured the problem.  Early May I had another CT scan and saw Mr Exon for the results, he advised me that the gist was low risk and he had been able to remove all of it and nothing else was showing on the scan.  I was discharged with no further medication or follow ups.   In total I had lost 1 1/2 stone of which I have put 1/2 stone back on, I eat well but perhaps not as much as I used to, I also have a 15cm horizontal scar under my bust and 2 scars where the drains were.  The shoulder continued to ache so I had a couple of appointments with a sports physio and pleased to say that is now fine.  I realise I have been extremely lucky but I do wonder if it hadn't have been for taking the naproxen how long it would have been before any symptoms had shown up.


Whilst in hospital a lot of interest was shown in the gist, I had a visit from a team of junior doctors, and one asked if she could use me as a case study - fame at last.

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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>>>.  

Michael Sayers...news

Update on GIST clinical trials that are recruiting and in the pipeline....

Forthcoming Patient Meetings

  • Friday 6th October in Cardiff
  • Thursday 7 December in Edinburgh
  • Friday 9th March 2018 in London
  • Friday 5th October 2018 in Manchester

More information will appear on this website in due course.

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.

Masitinib
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.