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Recently diagnosed with a NET in my middle lobe of my right lung.
Neuroendocrine Tumors (NETs) | Last Active: Jun 27, 2023 | Replies (10)Comment receiving replies
Hi Teresa
The NET was an incidental finding when I was in the hospital in January for diverticulitis. Evidently it is was noticed in 2018, but no one followed through. I am in the process of asking my pcp to request that to see a NET specialist at UCLA. I live in a small county in central California. I can’t even schedule a NET spot scan locally.
Replies to "Hi Teresa The NET was an incidental finding when I was in the hospital in January..."
Many of us with NETs had incidental findings. Often the presence of NETs are without symptoms. You are wise to seek out a NET specialist. It looks like @californiazebra has found good medical care at UCLA. I encourage you to keep advocating for the best care possible.
How is your diverticulitis being managed?
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Hi @gmapam
My lung NETS team happens to be at UCLA. I also had my NETSPOT scan there and have all my followup CT scans at a UCLA facility instead of locally per their request. I love my interventional radiologist there. He’s the one who destroyed my largest lung tumor using microwave ablation. I meet with him virtually after every scan. I also have a thoracic oncologist there who is part of a multidisciplinary NETS board. I meet with him virtually as well. I’ll be happy to give you more details thru private messaging or we can talk on the phone if you want (send a private message with any contact info). Let me know. 🙂