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Concerns after lobectomy for carcinoid tumor in lung

Lung Cancer | Last Active: Apr 26, 2023 | Replies (6)

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@kristin3

Thank you so much. My carcinoid was a typical. and 4.7cm. I was upset because they never mention the others on any previous CT scans until after my lobectomy.

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Replies to "Thank you so much. My carcinoid was a typical. and 4.7cm. I was upset because they..."

@kristin3 -- typical carcinoids are the best kind to have. They are the slow growing kind. I understand why you were upset that they didn't mention the other tumors. Are the other ones small? How many? I wonder if you might have DIPNECH also since that causes multiple tumors in both lungs. DIPNECH can be a precursor to carcinoids. I just had my 6 month CT scans and no significant changes in tumor size with any of them. They first discovered mine in 2008 and it took a decade for them to double in size. Good luck with your oncology visits. Again, my oncology team only wants to destroy tumors if they reach 2 cm.

DIPNECH also usually causes respiratory symptoms. Do you have any symptoms such as chronic coughing for no apparent reason and shortness of breath upon exertion? My carcinoids/DIPNECH are treated with octreotide injections to slow growth even more and to treat symptoms. It took my coughing away and reduced shortness of breath. It has been life changing for me.

If you haven't already, check out discussions on neuroendocrine cancer for more info. I posted an informational video overview for that.