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

Chris's Story

When I retired from my job as a primary school teacher I looked forward to doing all the things I'd not had time for in the previous 40 years. I became an active member of a local Probus club, I joined a gym, I took a more active role in my village church and went walking regularly in the beautiful Derbyshire countryside(as well as giving lifts to my grandchildren etc.) I didn't smoke and ate healthily. So apart from mild asthma I considered myself a really healthy person!

All this changed a year ago - I went to watch The Grand National with family and friends. It was disastrous, for after standing for 6 hours I was in agony and could scarcely walk. My GP arranged an appointment with a consultant, and in July 2009 I had a total hip replacement. In October I had my final check-up and looked forward to a visit to Bath to stay with friends. However this was not to be, for two days later I began having pains in my right side which I tried to ignore. But when I started to be sick as well I went to see my GP. I was told I'd probably got gallbladder problems and I was sent immediately to Chesterfield Royal hospital for tests. I expected being there for a couple of hours but I ended up staying for ten days and my life changed!

I was given various tests, x-rays and scans. Eventually a CT scan revealed that my pain had been caused by fluid on the lung for which I was treated with antibiotics. HOWEVER, the scan also showed a 'mass' on the stomach for which I had had no symptoms whatsoever. An endoscopy was then arranged and I was told I probably had a GIST. I was astounded - I immediately called my elder daughter (who is a sister at Weston Park cancer hospital, Sheffield). She was very informed - more so than some of the doctors who admitted they had little or no knowledge of GISTs. However I was very pleased that after a case meeting I was told that they would like to send my notes to Sheffield, to which I readily agreed. The following day, after being sent home, I had a phone call from a GI specialist nurse who said Mr Christopher Stoddard from Royal Hallamshire hospital would like to take on my case. I was given an appointment within a couple of days. Mr. Stoddard examined me and said I needed an operation to remove the GIST, and warned me that he might have to remove my stomach. Once more I felt devastated but after he had carried out another endoscopy he said he might be able to retain part of my stomach. Although I pay medical insurance I didn't know whether I would be covered after having major surgery only five months previously. Fortunately I was (I'll try never to complain again about the huge amount I have to pay from my pension), so as soon as my chest was clear I went into Thornbury hospital where Mr Stoddard carried out my operation. He told me he had removed a tumour as big as a tennis ball but he had been able to retain part of my stomach. I was in hospital for 10 days and received excellent care. I've been for one check-up and am due for another in a few weeks time. I was told that the risk of recurrence is quite low, so I'm now recuperating, trying to get back to 'normal' and getting used to eating small amounts more often! Incidentally I was given a small card from my GI nurse which can be shown at restaurants asking for their understanding in providing small portions! This proved useful when my younger daughter took me out for Sunday lunch: I showed the card, was given a child's portion and charged accordingly!

The past year's events in my life have changed me for ever, but I am so grateful that at every stage I have received the best possible advice and treatment, from my local GPs to the very knowledgeable specialist medical people. I also feel blessed to have a wonderful family, a caring church family and many supportive friends. To find the GIST Support website was an added bonus.

 

Posted: 19/03/2010

"NEWS RELEASE": CANCER CHARITY GIST SUPPORT UK CELEBRATE THE NICE APPROVAL OF REGORAFENIB FOR GIST CANCER PATIENTS READ ABOUT IT HERE

If you missed our Cardiff meeting 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>>>.  

Michael Sayers...news

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

Forthcoming Patient Meetings

 

  • 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.