My name is Stacey McAully and for those of you who dont know I was the first pediatric diagnosis of GISTs in Scotland. I have had 2 serious surgeries and was on Gleevec for 3 years. Now I am currently GIST free but have many pulmonary chondromas and an esophageal leiomyoma. My family recently got in contact with another GISTer in England and we met up for the first time.
We did some sight-seeing in Edinburgh and enjoyed eating out. Amongst all the fun we knew there was something that brought us all together. GISTs. We spoke about our experiences and what we all knew about this rare cancer. We got on exceptionally well and hope to meet up again soon.
We have also started to make plans to raise awareness of GISTs together in the UK. Hopefully some of our plans will work out and soon it will be as well known as other cancers. We hope to raise money for research.