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Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Neuroendocrine Tumors (NETs) | Last Active: Dec 28, 2023 | Replies (42)
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@mieczyslaw

I was diagnosed with non-small cell neuroendocrine lung cancer. Stage 1. I had my right lower lobe of my lung removed. Can anyone tell me in my language, how worried I should be about Diffuse idiopathic pulmonary neuroendocrine cell hyperplasia. I have tumourlets are in my bronchial and each f my lungs. They are slow growing. But have been there for five years. I know I "should not worry". But I am.

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Replies to "I was diagnosed with non-small cell neuroendocrine lung cancer. Stage 1. I had my right lower..."
Zebra | @californiazebra | Nov 10, 2023

@mieczyslaw
If you have a lot of tumorlets in both lungs it sounds suspect for DIPNECH. The worst part of that for me was respiratory issues (coughing, shortness of breath, clear mucus) for decades. Octreotide injections for 2.5 years now has minimized that and been life changing in a good way. Do you have any of those issues?

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mcohan | @mcohan | Nov 12, 2023

I am having my lower right lobe removed on Nov. 21
I have 2 typical carcinoids..
Can you tell me what to expect for the surgery.
I will have it done at Emory University hospital in Atlanta.

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