Replies to @grec, it is scary having a rare disorder, especially when active surveillance is the presecribed treatment….

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Neuroendocrine cells in Breast and Lungs DIPNECH

Neuroendocrine Tumors (NETs) | Last Active: Sep 16 11:26pm | Replies (35)

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@colleenyoung

@grec, it is scary having a rare disorder, especially when active surveillance is the presecribed treatment.

Are you having any symptoms? How was the diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) discovered for you?

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Replies to "@grec, it is scary having a rare disorder, especially when active surveillance is the presecribed treatment...."

grec | @grec | Apr 10 6:11am

I am coughing up blood tinged phlegm every day. This is how it was found. At first they said I had cancer in the lungs. They sent me to a bigger hospital to have a lung biopsy done. The biopsy came back DIPNICH. I have it in both lobes. I have a tumor in each lung. At this time my symptoms are blood tinged phlegm, coughing, shortness of breath and O2 stats down to 93.

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