Anyone have lung NETs lining your pleura?

Typical is good news. These are slow growing. I just had my 4th 6 month ct scan and these have not grown

I also have slow growing lung nets in both lungs one has grown very slightly over a year.

Keep us posted.

We received the confirmation from Mayo. His diagnosis is Atypical Stage 3/grade 2. He was given his 1st shot of Octreotide on Monday. He has decided to go to Hillman Cancer Center in Pittsburgh. Waiting on an appointment date.

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.

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/?search=atypical+lung+NETs#discussion-listview

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/?pg=2#comment-877805

Is this a recent diagnosis for you? What treatments, other than the surgery, have you had?

I was diagnosed July of 2024. I recently started lanreotide injections a couple of months ago. I am also currently receiving SBRT to treat the spinal net.

Was the pleura nodules diagnosed prior to surgery ? Is the pleural disease seen with CT scans?

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.

Yes it was. It showed on the CT, but was more extensive once surgeon got in. He was able to remove 7 as a whole, but more were present. It was stated that the tumors in pleura were not the origin of the cancer. It metastasized there.