Patient Empowerment and the World Wide Web

Then one man whose wife was diagnosed with leiomyosarcoma went back to the archives and found the reference of someone that was in a phase I clinical trial and asked if anybody else was on this trial.  It turned out that eight of the ten participants of the trial were on that List, and they started to communicate.  And from that moment on whenever somebody would come on that List saying this is how I feel, and my doctor has told me to take chemotherapy, instantly one of those eight people would say, you know what, it sounds like your doctor really doesn’t know.  It’s not his fault because this is a brand new test.  You should go back to your doctor and ask to be tested for this new protein.  And almost invariably people would come back and said thank you very much.  And then they would learn that they were all misdiagnosed, and therefore they were treated for a disease that they did not have.

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