Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Dear Chrissy, Sounds as if Dr is partly leaving the TP decision to you? Is Dr s the one who would operate? I think all docs would lesve an element of choice to the patient about such a big operation. Did you see that Crystal posted just now? She had a TP done last year. I'm in the Dr Whitcomb study as well....or, at least, I will be when they send me the tubes for blood. Again, like you, I was told that much of the research stays with them and they don't share the info with docs or patients; it's not a clinical lab but a research one. HOWEVER, THEY WILL CERTAINLY SHARE THE INFO ON THE TESTS FOR THE FOUR MOST COMMON GENETIC MUTATIONS. It's only the results of further tests after that which remain with them alone. At least that's what Beth told me. I'm not sure if she is another doc or a secretary or nurse but I was passed to her when I phoned. Glad the peg is hurting less. Glad also that you seem to be getting good support from your husband. It makes a huge difference; one already feels sufficiently alone with this illness. Take care. With love, Fliss Quote Link to comment Share on other sites More sharing options...
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