I'm one of the people who drive in from Connecticut to go to DFCI. Like Jennifer, I used them for an in-person second opinion and after some hemming an hawing, chose them for my treatment and care. I wish that my experience with them so far was as smooth as hers. It's early, but we've had some bumps. On a previous visit we were scheduled to meet with a radiation oncologist to discuss treatment of my brain met. When appointment time came around, the radiation oncologist called me to tell me that she doesn't do brain mets. That snafu not only wasted several hours that afternoon but delayed my treatment by about a week. Then this week when we did meet with the right radiation oncologist, while reviewing my scans, the doctor noted that the radiologist who read the scan wrote in the report that the images were not significantly different. Well, even we could see that the met had grown about 25% in between scans. If someone just went by the radiologist's notes, they would get a very wrong idea about what is going on in my head.
This is not meant to bash DFCI. I have no doubt that they are very good at what they do. The doctors (most of them) do seem very knowledgable and the nurses are very good. Understand that they are very big, and as with any large institution, things can happen. I wish that I felt more like a patient than a number at DFCI, but I won't care if they can keep this damn cancer at bay. Wherever you go, you or your medical proxy will have to be your own advocate and you should keep meticulous records, ask questions, and speak up when something doesn't sound right.
Good luck and keep us posted!
-Rich
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