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Biopsy showed DIPNECH

Neuroendocrine Tumors (NETs) | Last Active: Sep 23 10:46am | Replies (17)

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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.

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@kdubbs
DIPNECH sounds much scarier than it is. Sloooowww growing. You’ll be around for a long long lonnnnngggg time. Even if it turns into lung NETs they will likely be slow growing typical carcinoids like I have. We’ll grow old together. I’ve had all this for decades. I had the DOTATATE Ga68 PET scan and it turns out I don’t have the somatastatin receptors needed for NETs to show up on that scan so no more DOTATATE scans for me. But Octreotide still works to calm my DIPNECH cough and other issues. You’ll do great!