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 email@example.com 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.
Mark Atlay, Secretary
In 2016, following a couple of incidents of DVT, I was sent for a CT scan which showed the presence of a GIST in my stomach wall. Surgery and three years on Imatanib followed.
Touch wood recent CT scans have shown no reoccurrence and in October 2021, I took over from Sheena Kynoch as secretary to the Trustees of GIST Cancer UK, helping support their regular activities and meetings.
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.
Terry Riley, IT Support
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 a member of the GCUK IT support team, with responsibility for the operation of the ListServ forum and reporting on that and the helpline functions.
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, 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.
David Lane, Fundraising
I am 58, live in Aberdeen and was diagnosed with a very large GIST late in 2017. I was an acute admission to Glasgow Royal Infirmary early in January 2018 where I had extensive but very successful surgery. As a High Risk patient I am on Adjuvant Imatinib indefinitely.
A little while before I was diagnosed, I had cycled the 120 miles from from Inverness to Aberdeen to raise money for a cancer support charity, although I am not going to be able to repeat that feat anytime soon, I am back playing golf and living a fairly normal life.
In 2021, I attended an online seminar hosted by GIST Cancer UK, I was impressed by the quality of the presentations and the commitment of the people involved. I volunteered to help and became a Trustee of the charity in January 2022.
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, Dave Cook, Karen Langdon, Victoria Bassett , David Falconer, James Palgrave, Lena Stoll, Sheena Kynoch, Stella Turner & Jayne Bressington.
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 firstname.lastname@example.org