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Biopsy showed DIPNECH

Neuroendocrine Tumors (NETs) | Last Active: Sep 23 10:46am | Replies (17)

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Hi , I have the exact same diagnosis and situation as you do. I have tumorlets scattered throughout my lung. Was diagnosed with typical carcinoid net 9 years ago. 2 years ago I had part of my right lobe removed. I have scans once a year and thankfully no treatment. I can walk for 10 Miles straight but 1 flight of stairs and I am totally out of breath. They told me these are very slow growing tumors. I am 73 and I hope and pray for the best . They told me old age would get me before this. I hope they are right. Occasionally I do cough , but I c a live with that. Wishing you well

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Replies to "Hi , I have the exact same diagnosis and situation as you do. I have tumorlets..."

Wow! Very similar! (Except I’m not sure I could walk 10 miles.). I can, however, walk a lot as long as I don’t walk too fast. If I do that I start getting short of breath again and have to slow down and sometimes stop for a short bit. That part is frustrating because I used to walk quite a lot. And for some reason now my leg muscles have just gotten very, very weak, which doesn’t help! At this point, I still get scanned every six months, but the doctor appointments after each scan are now by remote video call. I’m sorry you’ve had to go through this too, but it’s nice to know you’ve had it this long and not too much has changed. I didn’t know. I had it at all until they found the tumor by chance. But who knows how long I had had it already, because by the time they found it, it has some malignancy. I really don’t worry about it too much, but I am reminded of it when I’ve had some symptoms.