Hi, I'm new here. I found out I had NETs incidentally as well. During a CT for kidney stones (in February this year), a neoplasm was found on the right middle lung lobe. I was sent for a regular PET scan which showed one on the left upper lobe, a possible lymph node nodule and a thyroid nodule. They biopsied all (4 separate procedures). The 2 lung tumors are NETs. The lymph node and thyroid are benign. Once I got the positive NETs results I was sent for a Dotatate PET. A month later, I was sent back for a CT. For me, the CT showed a much clearer picture (plus 3 more previously unseen) no false light ups than the PET scans did. I was told they will do all follow-ups with CT, fine by me.

I am set to have a right middle lobectomy the 31st. The left upper lobe will get radiation. Both of those tumors are just over 1 cm. The other 3 are 5 mm and less so will just be watched. I don't have any of the symptoms of NETs. Unless fatigue counts.

Every time I go in, they reassure me that this is a very non-aggressive, slow growing, rarely metastasizes cancer. So I haven't been too worried. Hopefully they'll give you some info that helps you relax.