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@jhhaas

Hi - I’m new here. But I saw your question. I was diagnosed this summer with a malignant lung nodule, found incidentally. Had right middle lobe removed at Sloan Kettering, eight weeks ago done robotically and recovering well. Testing revealed the malignant tumor was typical carcinoid, and that I have DIPNECH. I will get scanned every six months at Sloan Kettering, but my surgeon says there is no other treatment needed right now, and referred me to a local pulmonologist. The lobe that was removed revealed other nodules that were not yet malignant. And scans show there are lumps and nodule on my left lung. I’m just trying to find out if there’s something else I need to be doing in terms of prevention or treatment. The local pulmonologist was not familiar with DIP NECH. If you opt for surgery, I can’t emphasize enough how important it is to go to the very best doctor and team that you can find. I was so happy with my treatment at Memorial Sloane Kettering. FYI, I’m a 74-year-old, active female.

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Replies to "Hi - I’m new here. But I saw your question. I was diagnosed this summer with..."

Hi @jhhaas, I'm tagging fellow members like @mcohan @magnum2 @meryls12 @californiazebra who have experience with DIPNECH and lung nodules.

You ask a good question about whether there is anything more you can do to prevent or treat the multiple nodules that are not cancerous. My understanding is that DIPNECH requires early identification and close surveillance to prevent progression to carcinoid tumours. So regular monitoring is key. How often do you have follow-up appointments?