Hello @aulynn and welcome to the NETs support group on Mayo Connect. I'm so glad that you found this forum. DIPNECH and carcinoid tumors are rare, and it is great to connect with others who have walked through this diagnosis. There is a lot that we can learn from the experience of others.

I know that @californiazebra has posted in this discussion group and has walked this path as well. I would also like to introduce you to some other members who have discussed DIPNECH including, @jhhaas @lrittmiller and @hollywood817 .

Here are links to other DIPNECH discussions that you might find interesting

--Dipnech on lungs - does anyone have
https://connect.mayoclinic.org/discussion/carcinoid-dyptik-on-lungs-neuroendocrine-does-anyone-have/
--Carcinoid tumorlets neuroendocrine tumor cell hyperplasia dipnech
https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/
In these discussions you will meet members like @californiazebra @hollywood817 and others who will be able to share their experiences with you.

It sounds like this is a recent diagnosis for a rather long-standing problem. As you are new to the group, please share as you are comfortable doing so, a little about how this was finally diagnosed. Are you currently seeing a DIPNECH specialist?

Hi @aulynn
I’m hopeful that your team will be able to significantly reduce your coughing and any other symptoms. You’ll be so relieved! Can I ask what finally led to your diagnosis, how many modules/tumors you have and how big the largest one is? Zebra