What tests should be part of a surveillance protocol for lung NETs?

@haelsky, I'm tagging a few other members living with lung NETs like @ineedawhale @jessicamc @californiazebra @ggiinnaa @jhhaas @gprior, to share their follow-up plan and the tests they have done.

Naturally, every person is different and personalized surveillance plan will be developed according to your NETs and overal health status, age, etc. What follow-up plan has been suggested for you?

@colleenyoung
Probably better answered by someone who had their tumor(s) removed. I have lung NETs/ DIPNECH so too many tumors to remove. Mine are typical carcinoids. Ki-67 2%. I had a DOTATATE PET scan initially but don’t have somatostatin receptors so no more. Initially I had a chest CT every 3 months, now every 6 months indefinitely. I also take an octreotide injection every 28 days to manage respiratory symptoms and slow tumor growth. Very effective. I’ve had the nodules/tumors for decades and they are still confined to my lungs which is great news.

I did talk to someone who had a single 9 cm tumor and lobectomy. She had one chest CT a year for 10 years and no further issues after removal. I lost touch with her after that. Best of luck to you.

@colleenyoung I’m 2 1/2 yrs post lobectomy with remaining DIPNECH. I was scanned every 6 months, until my last one, now we’ll do once a yr. It is reviewed by my surgeon and team at Memorial Sloane Kettering where I had the surgery and was diagnosed, but I do not have a regular net specialist that I see other than that. I am doing pretty well considering, and my symptoms are not severe. But I think if the symptoms were more problematic, I would be looking for some kind of treatment. My tumors were “typical, and so far nothing has changed at all on the scans.

Hi!

Mine were caught super early. (CT scan for kidney stones found the lowest one.) I had my right middle lobe removed last July. It contained a 1 cm NET, self contained, but too close to my heart to do much else than remove. In Oct I had cyber knife radiation on the slightly larger one in my left upper lobe. I'm still at the "CT and labs" every 3 months stage, but I expect to transition to every 6 months at the next one. I do have one small "blob" on each of the other 3 lobes. They're too small to say they are NETs, but I guess suspicious enough to watch. If I have symptoms, I don't know what they are. My chromogranin is way below even the upper end of normal. Hope that helps!

Hi @ineedawhale just came across your post my is Jessica 😊 I also was diagnosed with typical carcinoid back in July last year found accidental for another issue pneumonia I've got a ct done that's when it was found so in dec of 2025 I've had my surgery they removed 2 lobes of my right lung it's called a bilobectomy my nodes also were negative so my lung specialist said he wanted a scan every 6 months which was meant to be done in June but I'm still waiting unfortunately there is a delay in scans in the hospital I attend I've had 2 ct scans so far one when I had pneumonia was wit contrast and one before surgery was with contrast so u presume my check up ct will be 2 wishing you all the very best ❤️❤️

Hello, I had my 1st lobectomy rml in 2018 and one tumour was net the other adenocarcinoma, they discovered i had DIPNECH along with asbestos plaque. I had 3 and then 6 monthly CTs and in 2024 another tumour had grown in my top lobe and I had my 2nd lobectomy, now it is ongoing 6 monthly CTs. So far so good. Good luck to all of you and keep a check on your lungs.

@jessie1990 oh wow, I hope not to lose another lobe. Was that a really long recovery? I did really well but it seemed like it took forever to get my energy level back up. I was diagnosed in Springfield, MO and we recently moved to KC, MO. I now see an oncologist with KU that has ties to Mayo. I consider myself really lucky (blessed!) that mine were found early and I got treatment quickly and other than surgery recovery, really haven't noticed there is anything wrong with me. Good luck getting in more speedily so you know what's going on.

@ineedawhale yes it sure was a long recovery sweetie I had open surgery so I had 29 staples down my back 😢yes my energy was zapped from me for a really long time I'm from Ireland 😊 I don't have oncologist I didn't need any other treatment but I am attending a lung specialist thank you hun the waiting is driving me insane 🥰

@jhhaas thank you for your response. Are your CT Scan Chest with IV Contrast?
Do you have any other surveillance tests?

@ineedawhale
Are your scans with IV contrast?