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← Return to Biopsy showed DIPNECH
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Neuroendocrine Tumors (NETs) | Last Active: Sep 23 10:46am | Replies (17)
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Oh, I also suggest you hook up with a NETs specialty team (likely at a university hospital, cancer center or Mayo) that is familiar with and has experience with neuroendocrine cancer and DIPNECH. My local oncologist and pulmonologist were not knowledgeable about lung NETs and DIPNECH, but my NETs team an hour away at a university hospital works with my local oncologist so I conveniently receive my injections a half mile from home. My followup visits with my NETs team are video calls. I do see that team in person for scans and procedures.
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Hi I was just diagnosed last week with both DIPNECH and NETS. I am out near Palm Springs, CA and wondered where your specialty team is, who you see and who is your local oncologist? I saw an oncologist at Loma Linda and he said the cough had nothing to do with my diagnosis and to see my lung doctor, which I do not have one. I want to go somewhere for a total second opinion about what has been done and get a plan set. I will have a PET scan this Thursday and maybe some more answers. Thank you for your help and support on this site.