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DiscussionNeuroendocrine cells in Breast and Lungs DIPNECH
Neuroendocrine Tumors (NETs) | Last Active: Sep 16 11:26pm | Replies (35)Comment receiving replies
Replies to "Hello @grec, I'm sure you have a lot of questions about this new diagnosis. On Connect,..."
Hi @grec
I shared my details earlier in the thread if you want to scroll back. I had a lot of phlegm with my chronic cough. The blood tinged part is likely from the chronic cough irritating your lungs. I remember seeing that on rare occasion but not all the time. My cough and phlegm are so vastly improved they are not even an issue now that I’ve been taking octreotide injections for 3 years. I don’t ever want to stop that treatment as it has been life changing for me. I still get some shortness of breath with activity but much improved. My O2 level is also at 93 in the recliner or bed but about 96 when sitting in a desk chair and even higher when walking. It was down 89 for a few months last year.
How large are your tumors? What treatment did they suggest? I had microwave ablation at UCLA to destroy the 2.6 cm tumor. They will destroy any others that reach 2 cm. I do have lung NETs as well. Please let me know if you have any specific questions for me. My interventional radiologist told me it’s the hundreds or thousands of tiny nodules lining the airways in DIPNECH (too small to show up on scans) that cause the symptoms not the ones we can see on the scans. That’s what Octreotide treats. It also slows the growth of the tumors we can see even though t is already slow growing. Based on symptoms I’ve had this at least 30 years.