GIST and Young People

Paediatric, Adolescent, Wild-type & Syndromic GIST (PAWS-GIST)

There are some sub-variants of GIST which are extremely rare and which we have grouped together as "PAWS GIST". These are:

Syndromic (Carney's Triad and Carney-Stratakis Syndrome)

GIST Support UK has taken the initiative and set up its own PAWS GIST sub group for furthering our knowledge on these rare kinds of GIST. Since our work started it has helped to develop the infrastructure for GIST research in the UK and in addition to establishing a PAWS-GIST clinic which convenes three times per annum, has been the catalyst for the National GIST Tissue Bank and a variety of basic research projects working to establish Wild-type GIST cell lines and Xenografts.

Paediatric/Adolescent GIST differs from adult GIST in many respects. It is more prevalent among girls and young women than among boys and young men. In the main, the illness starts in the stomach, where several primary tumours can present themselves at the same time. Metastases in the lymph nodes are also commoner than in the case of ordinary GIST.

If the genetic make-up of the tumour cells is examined (mutation analysis), typically no mutations are found in either of the genes which are frequently altered in adult patients (KIT and PDGFRA), and this is referred to as "Wild-Type GIST".

Imatinib seems on the whole to work less effectively on patients with PAWS GIST than it does for ordinary GIST. But there is also some good news: the tumours often grow more slowly and behave in a less aggressive way than their counterparts in adults. Young adults suffering from GIST are often found to have the wild-type GIST.

Syndromic GIST. A few paediatric/adolescent GIST patients may also have what is known as "Carney's Triad" or the " Carney-Stratakis-Syndrome". In both these illnesses, further tumours are found along with the GISTs. In cases of Carney-Stratakis-Syndrome there are also tumours originating in the nervous system. These are called paragangliomas. In patients with Carney-Triad, benign lung tumours (pulmonary chondromas) are observed along with GIST and paragangliomas) as well as, in some isolated cases, benign tumours of the suprarenal gland (adenomas), and benign tumours of the oesophagus (leiomyomas). Patients just suffering initially from paediatric/adolescent GIST may develop these other types of tumour over time. While Carney-Stratakis-Syndrome seems to be hereditary, it is not thought that the same applies to Carney-Triads.

Because PAWS GISTs are so rare we still know relatively little about them. However there are some centres where studies are being carried out, notably in Bethesda in the USA and also via our own PAWS-GIST clinic at Addenbrookes Hospital in Cambridge UK.

NIH Clinic in Bethesda - Since their first meeting in June 2008, which was attended by just 14 patients from around the World, the scientists taking part have established the Consortium for Paediatric and Wildtype GIST Research, CPGR.

This research consortium is open to other doctors and scientists interested in Paediatric and Wildtype GIST, and data is being collected from as many sources as possible. The scientists who take part will meet in the USA at the National Institute of Health.


PAWS-GIST - A GIST Support UK Initiative 

PAWS-GIST was started in November 2010 by GIST Support UK. It is a specialist focus group consisting of parents of young GIST patients and specialist GIST doctors from the UK.

Working in partnership with experts in America & Europe we aim to improve treatment & ultimately find a cure for PAWS-GIST in the UK.

If you are a Paediatric or Wildtype GIST patient/carer, please make contact with us. Our numbers are small, so we need everyone to be involved in order to take full advantage of the help that is being offered.

We have established a clinic in the UK for PAWS-GIST patients. This clinic meets three times a year and its objective is to develop greater expertise in treating this rare group of patients. Our PAWS-GIST clinicians are a focus group for oncologists all over the UK.  For further information about this clinic go to

PAWS-GIST patients, carers and supporters are raising funds for this initiative and for research.

If you would like to support this aim with a donation please see our just giving page

Donate to our PAWS-GIST fundHelp us to Find the Cure!

alternatively you can set up your own justgiving page to raise funds for PAWS-GIST or you can click here to download a PAWS-GIST sponsorship form which you can use.

We now have a dedicated fundraising co-ordinator for PAWS GIST who will help you with any of your fundraising activities. You can request our new fundraising pack by contacting.

There is a Facebook page which PAWS-GIST patients may like to use, and you can also keep up with us on Twitter. We have also just started issuing a regular Newsletter. Click here to download our August 2012 issue. .

If you are affected by PAWS-GIST and would like to learn more or be involved with any of these initiatives please contact

Jayne Bressington at


Clinical Trial - 3 v 5 years adjuvant imatinib recruitment extended until 31st March 2020- trial centre list update here

The next PAWS-GIST clinic is happening on Friday 12th April 2019. Registration is via PAWSGISTCLINIC.ORG.UK 

Our next Patient Meetings are in Leeds on Friday 4th October 2019 and London - 6th March 2020. 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.