What is the surveillance protocol for typical pulmonary NETs?

If you have had these scans were they with contrast ? This question is for those who had a lobectomy and no other treatments - diagnosis is typical pulmonary Neuroendocrine Cancer
For how many years were you watched ?

It's hard to say what any one person's imaging frequency or technology used will be. I have Neuroendocrine cancer of the Mesentery. Currently there is no cure for my condition so I'll be getting treatment and PET scans for as long as I'm alive and have insurance. There is no standard duration for those scans. I've had a big surgery. I get a PET scan about every 6 months. I get a monthly Lanreotide injection. I work with my doctors to decide what and when I get treatment, surgery, PET or CAT scans, etc. Hope that helps.

No contrast. I am 2 1/2 yrs post op from lobectomy with typical NETs, and dx of DIPNECH. I have been scanned every 6 mos so far, but I think my dr will drop it down to once a yr after my next one. He suggested that at the two-year mark but I wasn’t comfortable with that yet.

I have typical carcinoids and DIPNECH (50+ nodules) so they can't remove them. The largest one was destroyed with ablation. I have a CT scan every 4-6 months w/ and w/o contrast, but again my stuff is active. I talked to a lady who a one huge (9 cm) typical carcinoid removed via lobectomy at 70 years old and she had one CT scan each year for 10 years and never had another issue. Could breathe fine, no problem. One and done. No other treatment. The oncologist wanted to stop scans after 10 years, but she wanted to keep going. I haven't talked to her since to know who won that battle. Best of luck to you. Hope you're the one and done like most with everything in a single lobe are.

@californiazebra looks like you are in CA? Who are your specialists? I am recently diagnosed with Dipnich after my surgery to remove a 1.1cm typical carcinoid in my RML as well as surrounding lymph nodes. Out of 7, the 3 closest were positive as was an area of my RLL near the tumor. That was also removed and I was told the surgeon got clean margins. I’m told I will likely need the injections for the rest of my life. I’m a single mom to a teen and in my early 50’s.

@nvent5
Hi. For DIPNECH and typical carcinoids, I'm being treated at UCLA by the multi-disciplinary NETs team they have. I've been taking the octreotide injections for 5 years and they've been life changing for me stopping the chronic cough and minimizing respiratory allergies and chemical sensitivities that I had for 30+ years. I've had all this for decades and I'm doing well. Know that you're going to be fine and one day you'll be telling us about your grandkids in college. I'm going to send you a private message.