Just bumping your post up and also wanted to check in with you to see how everything is going?
Has anyone else had any experience with GIST or Gastrointestinal stromal tumours?
The following might also be of help to you:
We also have a service that may interest you, called Cancer Connect, which provides you with the opportunity to talk one-on-one over the phone with a trained volunteer who has had a similar cancer or experience. Please call 02 9334 1870 if you're interested, or send an email to email@example.com with your phone number and I can arrange for someone to give you a call
I am sorry for your diagnosis. It is indeed a very rare cancer. My neice was diagnoased with gist. She attended the Peter Mac centre in Melbourne as there were so few Dr's that knew anything about gist. They consulted with specialists in the US. There used to be a listserve forum online.
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