Further to the launch of the Paediatric, Adolescent, Wild-type and Syndromic GIST clinic at Addenbrookes Hospital Cambridge UK, earlier this year we are pleased to report that the second clinic happened earlier this month (August 2014).
The second clinic involved seven female patients, x5 in the range 16 -25 and x2 aged 25 plus, from a variety of UK locations.
For many, this was the first time they had met another person diagnosed with PAWS-GIST cancer.
Valuable conversations and connections were made at the welcome meal hosted by GIST Support UK on the evening before and during the clinic.
Having broken the ice and shared experiences, our patients met with the team of PAWS-GIST specialists for their individual consultations.
During this time they:
- discussed their individual case history
- asked any questions
- engaged with the specialist geneticist
- received recommendations designed to optimise management of their treatment and make life as normal as possible.
Patients attending the clinic are registered on the "National GIST Register" and where tissue samples exist are invited to consent for their samples 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.
To-date, eighteen PAWS-GIST patients have now attended a clinic and are part of the initiative to build a PAWS-GIST patient dataset in the UK. This will be used to build expertise and understanding of the causes and mechanisms of Gastrointestinal Stromal Tumour in children, young people and all with wild-type GIST and identify specific and effective treatments.
Applications to attend the next PAWS-GIST clinic should be made via this website, which also contains a wealth of information for patients, their families and those who are keen to support this ground breaking initiative.
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).
Best wishes
Ramesh Bulusu
Clinical Lead, PAWS-GIST Clinic
Consultant Oncologist MD, MRCP, Msc, FRCR (Oncology)
Jayne Bressington
Trustee GIST Support UK
Patient Director of the PAWS-GIST Initiative
