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

HILARY'S STORY

 

Early December 2005, I had a granary type bread sandwich mid afternoon, dashed to an evening board meeting, had chronic indigestion, felt very shivery and fluey, went straight to bed when got home and fully expected to be off work the next day with flu. I woke up the next day feeling fine.

About 2 weeks later felt uncomfortable in the breast bone area, decided to go to the doctor, told him about the flu type feeling and the discomfort, he decided (without an examination) that I had an ulcer and sent me for a blood test, to rule out helicobacter pylori.

Felt definitely under par through the Christmas period, a bit of discomfort and slightly breathless. Went back to the doctors to see about the blood test results after Christmas. No sign of HP so he decided I had an ulcer and put me on Omprezole to quell stomach acid, even though I hadn't had any sign of acid indigestion ever. He also told me I was slightly anaemic and told me to eat more red meat and take a multi vitamin with iron in it.

Throughout 2006, went back to see the doctors every 2-3 months or so and asked him how long would I have to take the Omprezole as he assured me that this ulcer would eventually heal itself, he just told me to carry on taking the tablets. Eventually nearly a year to the day I saw another of the doctors in the Group Practice and insisted that he sent me for tests or something.

I opted to go to Rochdale Infirmary and saw a specialist there in January 2007 who was very thorough, I was due to have a gastroscopy in the middle of February. Went back to the doctors early February, feeling very breathless and tired (we were having our bathroom renovated, and I thought the breathlessness was due to a dust allergy) he prescribed an inhaler and some prednisolone, he sent me for another blood test. 2 days later I collapsed and went to the local Go to Docs as it was a Saturday, the locum doctor on duty took one look at me and said that I needed to go to hospital immediately for a blood transfusion, as she could tell that I was severely anaemic, she also asked if she could examine me and distressingly for me, told me that she thought I had stomach cancer.

I had 3 units of blood the next day and the hospital duty doctor contacted Rochdale Infirmary to speed up the gastroscopy which I ended up having 2 days later. It was confirmed immediately that I did indeed have stomach cancer and the specialist felt that I was beyond treatment but asked me to come back later that week after he had spoken to his team, it was then that the resident GI surgeon, Mr Senapti, diagnosed (fortunately for me) a 13 cm GIST on the entrance to my stomach and told me that he felt he could rid me of this by performing a total gastrectomy, this was done 10 days later on 6 March 2007 (he also removed about 5% of my liver).

After 15 days of tough love at Rochdale Infirmary I was sent home to recuperate with an appointment to see the surgeon 2 weeks later to find out the results of the histology/biopsy report on the stomach and GIST.

I was told that I had low malignancy and I would possibly not need any further treatment, however I was to go and see Mr Leahy at the Christie Hospital, he confirmed that I wouldn't need tablets at this time and that I would be monitored with regular scans and gave me the 50/50 in 5 years time prognosis.

So here I am 11 weeks later in May 2007, getting to grips with the newly modified and 2 stone lighter me and feeling stronger every day, I can't say it was easy for me or my family, but I survived and recovered with healing and prayers and the brilliance of my surgeon Mr Senapati at Rochdale Infirmary.

Update August 2009:
In June 2008 after 15 months of NED, a GIST was found in my liver and I started the magic tablet Glivec, so far so good, my tumour has shrunk and I am managing my life with the tablets OK....I am grateful for all the support the Christie in Manchester and my fellow Gisters give me, and I am also encouraged and grateful by the ongoing research and advancement in the knowledge and treatment of the condition known as GIST.

Originally posted on 23rd May 2007, and subsequently updated 24th August 2009

 

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.