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Replies to "I was told when we destroyed my largest carcinoid tumor 2.6 cm with microwave ablation that..."
Neuroendocrine Tumors (NETs) | Last Active: Jul 20 1:51pm | Replies (11)
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I was told when we destroyed my largest carcinoid tumor 2.6 cm with microwave ablation that it would not reduce my coughing and SOB upon exertion because it’s not the tumors we see on the scans that cause the symptoms. With DIPNECH my airways would be lined with hundreds or thousands of tiny tumorlets we can’t see on scans and those cause the symptoms. That’s where the octreotide injections come in and really improved my symptoms. My constant coughing for 30 years was the worst part for me.
Replies to "I was told when we destroyed my largest carcinoid tumor 2.6 cm with microwave ablation that..."
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Good to know. Just frustrating that no one ever suggested the SOB on exertion was related to DIPNECH. I read it on line. My lobectomy was because the largest tumor was cancerous and there were other tumors in that lobe and throughout the lungs. Thankfully I don’t have coughing, but I do plan to see a NET specialist for another opinion just to be sure I shouldn’t be on a treatment med. I went to MSK and they didn’t refer me anywhere except to a local pulmonologist - just scans every 6 mos so far. I feel fortunate - but want to make sure I shouldn’t be more proactive