I have DIPNECH, also had my right middle lobe removed in October 2023. At this point, I am just being scanned every six months. I do have other tumorlets and nodules in multiple locations on other lobes, but so far everything is stable. I am seeing at Memorial Sloane Kettering. And thankful that my doctor knew about NETS. That said, if it starts progressing, I will try to get a second opinion from another net specialist, especially if they want to start treatment. It can’t hurt. I understand the frustration of so little being known about it. My other local doctors really are not familiar with lung nets and DIPNECH. Research is being done for sure, but there were really very few cases reported worldwide. My doctor at MSK, and others, feel that there are a lot more cases out there that are just not being diagnosed for lack of knowledge and understanding. But because it’s uncommon, it makes me second-guess any medications I take that might be prescribed by other doctors who aren’t aware of how it might impact my DIPNECH. You are your own best advocate, so don’t hesitate to get second opinions and question your doctors when you’re unsure about things. If you haven’t already done, so, there is a Facebook group called Lovable Lungnoids that is very supportive. Also, Living with Rare Lung Disease. There are members in both of those groups that have DIPNECH.