Addenbrookes Hospital in Cambridge hosted the 4th Paediatric, Adolescent, Wild-type and Syndromic GIST clinic on 17th April 2015.
This clinic welcomed five patients, x3 female and x2 males and their carers.
We enjoyed the welcome dinner on the Thursday evening and began to learn about how each patient has been coping since their diagnosis.
All came armed with a full medical family history and a list of questions for the PAWS-GIST specialists about their individual circumstances.
Each patients’ situation presented differing degrees of complexity to our team of experts and the recommendations made were very welcome and in some cases unexpected.
As is standard, all PAWS-GIST clinic patients are registered on the National GIST register and are invited to consent for any GIST tissue samples that exist to be sent to/registered with the National GIST Tissue bank. They also have access to the latest forms of genetic diagnostic testing for inherited forms of GIST and the opportunity to join state-of-the-art research studies into genetic aspects of GIST.
The next PAWS-GIST Clinic will be held on 17th July 2015.
Applications to attend should be made via this website (www.pawsgistclinic.org.uk) which also contains a wealth of information for patients, their families and those who are keen to support this ground breaking initiative.
GastroIntestinal Stromal Tumours affect c.900 new patients in the UK each year, c.15% are estimated to be PAWS-GIST patients.
If anyone you know has been affected by GIST please alert them to our clinic and this website (www.pawsgistclinic.org.uk) and also to GIST Cancer UK who are working to help patients and advance understanding of this rare disease www.gistcancer.org.uk .
Our sincere thanks go to all of the specialists involved in the medical reviews and preparations in advance of the clinic and for the care and expertise delivered by Dr Bulusu, Professor Judson, Dr Leahy, Mr Hardwick & James Whitworth on the day.