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Replies to "No - I went to MSK and they said it was not needed at this point...."
Neuroendocrine Tumors (NETs) | Last Active: Jul 20 1:51pm | Replies (11)
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No - I went to MSK and they said it was not needed at this point. Will get scanned every 6 mos. It’s just frustrating that other doctors really don’t know much about it. So, for example, my pcp, and even the local pulmonologist, don’t think to relate symptoms to that (DIPNECH). But I think I will head to a net specialist for a 2nd opinion. I have only seen the surgeon at MSK (whom I adore) - and he likely reviewed it with a tumor board, but I figure I’d rather be safe than sorry
Replies to "No - I went to MSK and they said it was not needed at this point...."
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Good plan to see a NETs team. DIPNECH is rare. Latest data I’ve read is 300 documented cases. Even the lead thoracic surgeon at my highly rated hospital hadn’t heard of it. I have a NETs team at UCLA now. My pulmonologist told me GERD was causing my coughing. Treatment for that didn’t help. It is the DIPNECH. I have 50+ carcinoid tumors 1 cm or more. Not all have been biopsied but any over 5 mm are considered malignant. They were first seen on a scan in 2008 yet I am still considered stage 1 for lung NETs with advanced DIPNECH. I will likely have more ablations in the future for any tumors that reach 2 cm or suddenly take off from the pack. Those are all the most likely to metastasize. These are very slow growing tumors and octreotide slows growth even more but not without side effects. I was told octreotide may lose its effectiveness at some point. I hope not. I couldn’t stand the coughing again and it would be a social problem again especially in a post-COVID world. Mostly I consider my DIPNECH to be a nuisance disorder. Actually lung NETs too unless it metastasizes at some point. You are wise to closely monitor the situation but I believe you have many good years ahead so enjoy your life. 🙂