NED GI NETS since 2012. New finding on annual chest CT, Tubular Mucoid

Posted by kathryncd @kathryncd, Oct 22, 2022

Original dx 2012 NET in terminal ileum. Right hemicolectomy, small bowel resection with 22 mesentary nodes removed, 2 positive.
Had my annual imaging 10/19/22 MRI pelvis, abdomen all clear. CT chest reports NEW 5 mm TUBULAR mass in right upper lobe and endobronchial density left upper lobe, mucoid impaction.
Has anyone received a similar finding? Thank you. I have video call with Dr. Wolin 10/24/22 and have a consult with Dr Alexander Kaufman(thoracic surgeon ) at Mt Sinai 11/4/22

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 23, 2022

Hello @kathryncd and welcome to Mayo Connect. I am sorry to hear of this new finding in your right upper lobe, I'm sure you are concerned and would like to meet members with a similar experience. On Connect there are some other members with lung NETs such as @gapsc and @tatteesmom3. I hope they will join this discussion and share their experiences with you. If you would like to read posts by other members who have lung NETs, here is a link that will take you to that discussion group:
--Typical Carcinoid Tumor in Lungs
https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
It sounds as if you have a good medical team in place. As you have a video appointment on Monday, I would recommend that you have a list of your questions prepared so that you can use the time wisely to cover all of your areas of concern.

As you posted this in the NETs discussion group, I'm guessing this has been determined to be a NET in the lung? Is that correct?

Teresa, Volunteer Mentor | @hopeful33250 | Nov 27, 2022

Hello @kathryncd

As it has been a while since you first posted on Connect, I was thinking about you and wondering how you were doing. By now you have probably had your video consult with Dr. Wolin and your consult with the thoracic surgeon, Dr. Kaufman. I hope that you now have some more understanding about your NETs, as well as a treatment plan in place.

I'd like to hear how you are doing. Will you post an update when it is convenient?