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

SUE'S STORY

October 2010 I had a "significant bleed" this was sudden needing emergency treatment with 2 units of blood. In the subsequent investigation to find and stop the bleeding a gist was discovered at the top of my stomach.

I was referred to the Royal Preston Hospital who performed a further endoscopy and a laparoscopy to make sure they knew everything about the tumour, position, size, etc. before surgery. The pictures were most interesting!

November 2010 I underwent surgery. This was open surgery as the tumour was quite close to the esophagus and the surgeon was not able to achieve a sufficiently good join with keyhole surgery (he did try!). The tumour was 6.5 cm and "very active". I was in hospital for 8 days. Within 4 weeks I had made a total recovery, eating as much as usual (which is quite a lot!) riding horses, mucking out stables, running a busy household with 14 for Christmas, etc., etc.

For the past 2 years I have had quarterly CT scans and appointments with the Oncology Team at Preston. This entails a 100 mile round trip twice, once for the scan and once to see the consultant, but is well worth it as both the surgical team and the oncology team have been marvelous. Happy to say that now on to 6 monthly scans and appointments. Anyone being diagnosed in Cumbria or Lancashire I would heartily recommend the Royal Preston Hospital.

For anyone just diagnosed be of good cheer and I hope you are as lucky as me. I have had no problems (so far), my only disappointment is that being on nil by mouth for almost a week during surgery I only managed to lose a measly 4 lbs weight!

Sue Harrison

 

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.