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I am 75 and have carcinoid tumors NET in lungs
Neuroendocrine Tumors (NETs) | Last Active: May 8 8:12pm | Replies (128)Comment receiving replies
@californiazebra it was about 3cm. I was very frustrated that I’d been misinformed by my Dr for all these years. Also all my abdominal CTs showed the slow growth but not one radiologist commented . Most of the scans were done at the same hospital so it’s very easy for the radiologist to do a comparison. It was only last summer when I was seen in a different hospital that the radiologist alerted me.
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@azrosegold
That's a significant size. My largest was 2.6 cm and they destroyed it with microwave ablation to be sure it wouldn't metastasize. I was told our guideline will be to destroy any that reach 2 cm or start to behave differently from the rest of the pack such as growing much faster. Those that are just growing slowly over the years will just be monitored and are best left alone. Just know I've had DIPNECH/NETs for decades and it has never spread outside my lungs so that's really good news. Glad you had the large one removed.
Oh, I have also learned that specialists often ignore incidental findings when they are not related to the issue they are treating. That's a disservice to patients and they should have you discuss incidental findings with your primary doctor at the very least. This is exactly why I always read the scan reports myself so I can ask questions and do my own research.