A couple of days ago I had an appointment with the colorectal surgeon who found the initial tumor in 2008. During my appointment with him I described to him my frustrations with Stanford. He said that they are very difficult to communicate with and that's why he no longer refers patients to them. Instead, he refers patients to UCSF. He gave me the name of a top cancer specialist up there and so I called them to self-refer. Luckily I am fastidious about collecting and filing away every test and lab report, every surgical report, everything and I had a pretty complete file here already. David helped me to copy and label 24 CDs and DVDs which contain the images of all of the scans that I've had done. I gathered all of the papers and headed to Kinko's where I copied 199 pages of medical history. I sent that packet along with the 24 discs to UCSF and the entire package will arrive there by noon tomorrow. Probably next week I'll hear back from the New Patient Coordinator (it takes 2-3 days to review all of the information) and then I hope to get on the schedule. I hope to be included in their tumor board.
I don't think that my treating oncologist feels like any of this is necessary but he's indulging me. Who knows, it just may save my life, and if it's an effort that I want to make then it's my choice to do so. Luckily we have amazing insurance. For the rest of the year, medical care won't cost me a thing.
Go, Laurie & David! Wow on all the history...they're bound to include you in their tumor board (they don't even have to do any digging for info because it's all right there). Fingers crossed that your choices lead to a good outcome! I love that you're DOing stuff and not just letting stuff happen to you. I hope that your actions lead to a big victory with your big guns (nearly typed buns there...lol). Hugs to you both, Kathy xoxo
ReplyDelete""I don't think that my treating oncologist feels like any of this is necessary but he's indulging me""...WTH?? Keep us posted...waiting is the hardest but seems we do more of that than getting answers or appointments scheduled. Love you guys gobs and gobs... {^..^} ...Mom...
ReplyDeleteMy reason for saying that is because he himself hasn't referred me to Stanford or to UCSF - my communication with them has all been self-referred. Also, in my record collecting I got a copy of a summary letter that he sends out to my other doctors. In it he states that "She is going to return to the Stanford GI Tumor Board to discuss whether surgical intervention is indicated. I do not believe that it is in any way, but the patient feels strogly that she would like to have this question answered. Similarly, I do not see a role for CyberKnife, radiotherapy, or any other external beam modality to target these multiple areas of concern." Heck, maybe I should just post his letter!!
ReplyDelete"Multiple areas of concern" It doesn't sound as if he's overly concerned about them. I'm glad you're going to UCSF and not just blindly accepting your onc's and Stanford's insufficient answers; hopefully, you'll get less vagueness if not actual cutting edge treatment!
ReplyDeleteGood reply Laurie...I do not understand their lack of caring or sense of urgency that we have, they do not have these tumors growing inside of them somewhere...they might feel different if it were them with these things growing bigger and multiplying. Cannot understand why they even get into that field except to get rich doing as little as possible. Hoping with all of my soul you find answers and remedy at UCSF and it will be because you fought for it yourself with just Davids help. Love you more than anything in this world. mom...
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