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I am sorry to hear of your struggle with a NETs diagnosis. I can only imagine how disappointed you must be. If you don't mind sharing more, could you share what the other treatment option was?
I am wondering, however, why your appointments in Rochester (I'm assuming that you were going to the Mayo Clinic) were canceled.
All patients have the right to obtain a second opinion. Have you considered getting a second opinion at Mayo to see what other options may be available to you?
Here is a video presentation from Dr. Thor Halfdanarson, who is a world-renown NET doctor at Mayo. You might find his talk interesting,
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The consults and whipple procedure at Mayo Rochester were canceled because my cancer is a stage four. When found not only did I have the pancreatic tumors but it had spread to my left hip and several lymph nodes of my abdomen. At my follow up in March my Mayo Oncologist in Eau Claire suggested the PRRT or an oral chemo. Because the cancer has now spread even more the PRRT is the best choice for me. I will be heading out early tomorrow (April 24) morning to Rochester for my first infusion. Thank you for the video, it was helpful.
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