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I was Dx’d with DIPNECH post op after removal of right middle lobe Oct 2023. PET scan and biopsy showed malignant carcinoid tumor. Pre op scans showed multiple bumps and tumorlets in addition. Turned out it was “typical carcinoid” tumor. Tumor was found incidentally, thankfully! I had some shortness of breath on exertion and was sent for cardiology tests when they found the lung tumor. I feel fine now 9 mos later, but I do still have the SOB on exertion. I have some fatigue, but I’m also 75 yrs old. My biopsy by bronchoscopy did not cause any problems, just rested for 24 hrs. The more I read about DIPNECH, the more I understand the SOB on exertion can be a symptom , as well as my GERD. Best wishes to you!
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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.
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Hello @jhhaas,
I appreciate you adding your experience to this conversation started by @lrittmiller. So many people diagnosed with carcinoids (in various locations) were diagnosed incidentally as you were. My experience was similar. It is always good to find these rare cancers earlier rather than later.
I'm glad to hear that you are feeling good since your surgery. Have you had any treatments other than surgery?