Thank you--you are knowledgeable. The NET specialist I consulted at UNM said the beast cancer was moving "too quickly" to treat with any NET drugs, and so said no. In Utah the specialist refused to see me because of the location of the tumor--my breast. NYU implied the same. Basically I understand that a NET specialist does not have to accept a patient, and won't if you don't fit into their protocols. Basically I have been rejected by NET centers as if I did not have it. Which appears to be the thinking: I do not have NETs, I have breast cancer. There does not seem to be a doctor anywhere who will treat it differently. I'm no longer upset by this, and have pretty much accepted the situation. The only boundary I've been able to have is in breast cancer world, where I have turned down chemotherapy, additional biopsies, additional surgeries, and longer courses of chemo therapy because I have no proof or statistics that any of it will work on a NET. I don't even have anecdotal evidence. It has been almost laughable. Each doctor admits they have never seen it. Then announces that their approach will work perfectly. Then says I'll probably be dead in 1-2 years. My husband and I got to to the point where we had to not look at each other to not burst into laughter!
Thanks for your interest and thoughts--very much appreciated. I've had a lumpectomy, 3 weeks radiation, and am on an A1. I'm a year in, and currently doing well, so enjoying things when I can.