Connect
← Return to Anyone have lung NETs lining your pleura?
Discussion
Anyone have lung NETs lining your pleura?
Neuroendocrine Tumors (NETs) | Last Active: Jul 24, 2025 | Replies (22)Comment receiving replies
I had a small nodule removed last year that was confirmed to be neuroendocrine lung net. During the surgery I was found to have 100s of tumors in my pleura. I was diagnosed as Grade 2, Atypical, moderately differentiated Stage 4a. Since then, my cancer has spread to my lymph nodes and I have a spine metastasis. I was told it is very rare for this cancer to present in the pleura. Has your brother had a difficult time with the pleura nets evading imaging? CT scans do not adequately reveal what was seen in the surgery.
Replies to "I had a small nodule removed last year that was confirmed to be neuroendocrine lung net...."
Im so sorry youre going through all this.🙏🏼
He has not. The surgeon did tell us after post op that the tumors in the pleura were more extensive than the scan originally showed. He has Gamma Scan scheduled in a few weeks. The plan is to resume Octreotide in August.
Connect
Hello @kathyzee and welcome to Connect. I can understand your concern and wanting to connect with others who have a similar diagnosis. Here is a list of other discussion groups where atypical lung NETs are mentioned: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
There is also a discussion on spinal NETs. Here is the link to that group where you can post, ask questions, or make comments. Here is the link:https://connect.mayoclinic.org/discussion/net-in-the-spine/
Is this a recent diagnosis for you? What treatments, other than the surgery, have you had?