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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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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.
Replies to "Hi I was just diagnosed last week with both DIPNECH and NETS. I am out near..."
@nanabarbara
I’ll reach out to you in a private message.
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Hi! I’m in VA but will be going to Duke at some point to see an oncologist there once the referral is sent. My pulmonologists are both located in my state. One has said specifically that Duke is the best center in my area to manage my DIPNECH, though I’m not sure if they have a NETS team. I haven’t had a Dotatate/PET scan & I wonder if having one would identify any tumors, or if I should rest on the fact that none were detected in my high resolution cat scan, just tiny nodules. I feel so thankful to have connected with people who have this disease. It makes it seem less scary. Hope this helps.