Who We Are
GISTs (Gastrointestinal Stromal Tumours) are malignant tumours of soft tissues in the gastro-intestinal tract (the stomach and intestines). They are a kind of sarcoma, which is a very rare type of cancer. Around about 2% of tumours in the gastrointestinal area are GISTs.
GIST Cancer UK is a charitable trust formed in April 2009. We are here to support GIST cancer patients, fund research into GIST, improve treatments and find a cure for this rare cancer. We receive no government funding and are run by a board of volunteer trustees who have a close association and experience of GIST cancer (see below).
We are the only UK based charity solely devoted to GIST cancer.
We are a network of GIST cancer patients & carers working with top GIST specialists & National/International groups, to promote best practice. We exist to help GIST patients and their families come to terms with living with GIST cancer and we raise funds to:
- Stimulate & fund research
- Support Patients living with GIST cancer
- Provide Information for GIST patients and their clinicians
- Raise awareness of GIST cancer
We have been working hard to establish an infrastructure here in the UK that will help to stimulate research into GIST. In recent years we have helped to re-write and update the National GIST Guidelines and establish the National GIST Tissue Bank and also the PAWS-GIST clinic at Addenbrookes hospital in Cambridge. All of these things help to stimulate research and our work continues...
This site is primarily for GIST patients and their carers. Most of the content is provided by patients but is vetted for accuracy by our Medical Advisory Board. We value your feedback so please feel free to email us at firstname.lastname@example.org with your comments, corrections and additions.
GIST Cancer UK is currently managed by the following Board of Trustees:
Nic Puntis, Chair
I was diagnosed, just before my 40th birthday, in March 2010, with a 8cm GIST in my stomach. It was successfully removed but found to be high risk due to its mitotic count. I was therefore, put on adjuvant imatinib for 3 years. I am still disease free and am checked every year.
I went to my first GCUK meeting in 2010 and volunteered to join the Trustee board in 2012, becoming Chairman in 2015.
Jayne Bressington, Vice Chair & Patient Director for PAWS-GIST (pawsgistclinic.org.uk)
When my 15 year old daughter was diagnosed with Paediatric/Wild-type of GIST it was the worst news our family had ever received. Very little was known/available to patients with this diagnosis in the UK. In June 2010 we attended the Paediatric, Wild-type GIST Clinic in Washington DC, hosted by Dr Su Young Kim and Dr Lee Helman. Inspired, I felt determined that UK patients should also have this facility.
Encouraged by GIST Cancer UK, with fundraising from families, friends, supporters and with the dedication of Dr Ramesh Bulusu, we have opened a specialist clinic for Paediatric, Adolescent, Wild-type and Syndromic GIST patients in the UK. We host three PAWS-GIST clinics each year at Addenbrooke’s Hospital in Cambridge. Patients can register to attend the clinic on the clinic web site www.pawsgistclinic.org.uk
Essential bi-products of this initiative have been the establishment of the National GIST Tissue Bank and the National GIST registry in the UK, stimulation of GIST research projects and support of GIST clinical trials.
My beautiful daughter Eve tragically lost her battle with this monster disease aged only twenty three. As Vice Chair of GIST Cancer UK, I work to improve understanding of this disease, identify specific/effective treatments and improve the outcomes for all GIST patients. The only satisfactory result for GIST and PAWS-GIST cancer is a cure.
Sheena Kynoch, Secretary
“This year (2020) I will become a nineteen-year survivor of GIST cancer”
I was diagnosed with GIST of the stomach in 2001 and in June of the same year had a partial gastrectomy. In June 2003 metastatic lesions were observed in the liver. I was immediately put on imatinib in the hope of shrinking the tumours and by the time I had an operation to remove them in September 2005 they appeared to be completely cystic; no living cells were found. I continued to take imatinib until October 2015. To date I remain tumour free.
Surviving nineteen years from diagnosis of a disease which a few years earlier would have been fatal is truly miraculous. I attribute this to the development of imatinib and the skill of the medical team in charge of my care. For those with a more recent diagnosis of GIST cancer the science has developed even further.
I have been given nineteen more years to share with my husband; seen our son married and given me precious time with our two grandchildren. No-one could be more blessed.
I have been a trustee of GIST Cancer UK from its inception in 2009 and since then have been secretary to the charity. Our aim is to find a cure for GIST cancer.
Terry Weldon, Listserv and Help Line
I am a GIST patient who takes a lead supporting patients on our private online patient forum (Listserve) and am also one of our helpline team supporting patients and carers from a first hand perspective.
GIST (Gastrointestinal stromal tumour) is a rare cancer, one of the sarcomas. Because it is so rare, patients can experience the diagnosis and treatment a bewildering, solitary experience without suitable support from others in a similar situation. GIST Cancer UK offers exactly that support, for patients and their family/carers. I have found the patient/carer days an excellent, very valuable opportunity to learn more about the condition from expert clinicians, and to meet and chat with others - some have been living with GIST for many years, some newly diagnosed. For anyone dealing with GIST, especially for the first time, I strongly recommend attending. It has helped me enormously.
James Palgrave, IT Support 1
I was diagnosed with stomach GIST in June 2016 and the charity helped me come to terms with it. At the time I was deciding to go into semi-retirement so I decided to use my Engineering skills to help the charity with their IT needs and now I look after the email, database, website etc.
After successful surgery in 2017 following tumour reduction with imatinib treatment, six months later metastases appeared in liver which were kept under control with second line treatment sunitinib for eight months until that failed and I’m now on third line treatment regorafenib which has stabilised the tumours.
Terry Riley, IT Support 2
My GIST diagnosis in July 2016 came as a total shock. Three operations, one clinical trial and almost four years later, I'm currently on a daily 400g dose of Imatinib, but not yet free of the GIST. I was very happy to be elected a Trustee for GCUK early in 2020.
I am supporting James Palgrave, our IT guru, with some responsibility for the operation of the ListServ forum and reporting on that and the helpline functions.
Stella Turner, Fundraising & Volunteer Support
I have close family friends whose lives have been impacted by PAWS-GIST.
I support events and fundraising activities while also co-ordinating GIST Cancer UK's volunteers.
Sharon Bethell, Events Manager
I was diagnosed with Wild-Type GIST in 2014 and became a Trustee of GCUK shortly after. I have managed GIST Cancer UK's meetings for 5 years having previously worked in the events industry for 15 years. My role is to work with the Trustees in communicating and managing the regional Patient/Carer meetings that we hold each year and to assist with speaker selection. This includes data management for those events whilst also supporting the Trustees in general research and data capture.
Amalia Formoso, Corporate Fundraising
John South, Treasurer
My daughter was diagnosed with a PAWS-GIST tumour aged 18 and despite a partial gastrectomy, needed further surgery 7 years later to completely remove her stomach and a section of her liver. She was lucky enough to be one of the first patients to receive some specific internal radiotherapy treatment (SIRT) in 2017 and is now in remission.
As a family, we attended the GIST Cancer UK Patient meeting in Manchester in 2017. I was very impressed by the work of the charity which offers, not only support to the sufferers of GIST, but also funds many research projects which we hope will help find a cure for the disease. I immediately volunteered to join the board and have since become the treasurer. I have almost 50 years’ experience in the NHS after a career in management.
Tony Manuel, Shadow Treasurer & IT Support
I was diagnosed with a wild-type GIST in September 2019 after an associated stomach ulcer burst suddenly. Despite having a 5cm tumour and several lymph nodes removed in January 2020, I still have metastatic GIST in my lymphatic system and am awaiting further diagnosis and a treatment plan. I have found the support and information provided by GIST Cancer UK invaluable during this difficult period, so I am very pleased to offer my help as a Trustee.
With my background in business and engineering I am acting as shadow Treasurer and as part of the IT team.
Jane Means, Social Media
I had a 5cm GIST removed in 2019 just before my 50th Birthday. It was a complete shock after I’d learned I’d got a GIST from the notes left on my hospital bed. After not getting many answers from Doctors, I turned to GIST Cancer UK. Their support and knowledge were invaluable when I desperately needed answers. The Forum was so supportive and I learnt so much on the Patient Day, that I wanted to give something back to the charity and help raise awareness. I run a Gift Wrapping Business working with prestigious clients, media and TV. I've spent a lot of time travelling overseas and enjoy sailing, travelling and look forward to working with GIST Cancer UK with their Social Media.
Our Life President
Our grateful thanks go to all existing and previous trustees who have given of their time and expertise to improve support and services for GIST patients.
These include: Barry Davis, Irene Cook, Nicola Wardle, Barbara Dore, Michael Sayers, Tim Mason, Debbie Mitchell, Terry Dickinson, Leigh Hibberdine, Patricia Thomson, Linda Butcher, Valerie Harris, Christopher Rickman, Victoria Bassett and David Falconer and to Marion Oliver and Dave Cook who are part of our patient helpline support.
Appointments to the Board of Trustees are normally for a period of three years, with members presenting themselves for reappointment on a rotational basis.
We are always interested to hear from individuals who would like to ensure that GIST patients are supported and that GIST research is stimulated. Please do contact us if you are able to help in any way at email@example.com.