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What is the surveillance protocol for typical pulmonary NETs?
Neuroendocrine Tumors (NETs) | Last Active: 1 hour ago | Replies (12)Comment receiving replies
@californiazebra looks like you are in CA? Who are your specialists? I am recently diagnosed with Dipnich after my surgery to remove a 1.1cm typical carcinoid in my RML as well as surrounding lymph nodes. Out of 7, the 3 closest were positive as was an area of my RLL near the tumor. That was also removed and I was told the surgeon got clean margins. I’m told I will likely need the injections for the rest of my life. I’m a single mom to a teen and in my early 50’s.
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@nvent5
Hi. For DIPNECH and typical carcinoids, I'm being treated at UCLA by the multi-disciplinary NETs team they have. I've been taking the octreotide injections for 5 years and they've been life changing for me stopping the chronic cough and minimizing respiratory allergies and chemical sensitivities that I had for 30+ years. I've had all this for decades and I'm doing well. Know that you're going to be fine and one day you'll be telling us about your grandkids in college. I'm going to send you a private message.