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.

Thank you for all responses
My first surveillance screen was without contrast
I requested second CT should be with contrast
Dx : typical - Surgery was in
9/22/2025 robotic surgery
RML LOBECTOMY
RLL BASILAR SEGMENTECTOMY
I am age 78 - probably had this for decades- dx was always reactive airway disease. Tumor was found on a CT for issues of chest pains-
coronary arteries- negative .
Mucous plug was identified in
6/23 - incidental findings. Unfortunately, I did not read report carefully. In April 2025, a very conscientious GI doctor (who I knew as an intern), said he would order CT if chest with and without contrast but I need to follow up with a pulmonologist,
The whole saga began in April 2025 and is on-going .
Medical appointments
Scans
I am grateful .

@jhhaas
Thank you for your response.
Is your physician a
NET specialist?

I am scanned and followed up at Memorial Sloan Kettering by my oncological thoracic surgeon, but my symptoms do not require treatment at this point, and my NETs were typical so it’s not as likely to cause problems in the same way the atypical tumors. I do believe if anything changed on my scans or if I started having more problematic lung issues that they would refer me to their oncology department. I have thought of getting an evaluation in Philadelphia, where there are other net specialists just for a second opinion. But I don’t think I would want preventative treatment unless I had more problems because I know overtime that causes problems of its own. It’s just a little disconcerting because my primary doctor, and even my local pulmonologist who is kind of monitoring my overall lung function don’t have a lot of experience with DIPNECH. When I inadvertently discovered the lung tumor while having a heart scan, I saw a pulmonologist locally for the first time who suggested a biopsy. I went home and called MSK to ask their advice, and had an appointment with my surgeon within the same week. He was amazing, and after seeing the scans, and then the biopsy told me, he suspected nets, and DIPNECH. So I do have a high level of confidence in him and their team, it’s just that they don’t act as a primary doctor, . They are just monitoring.

@jhhaas
Typical neurosurgeon cancer of the lung from my understanding requires on- going
care from a NET specialist
University of PA -Medical Center has a dedicated NET specialists