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

My health insurance covers the scans but prior authorization is
required.
I have managed Medicare

@aprils1957
Thank you for your response
and the helpful information.
I see a thoracic oncologist who is knowledgeable about
NET in New York City at
Perlmutter Cancer Center.

@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.

@californiazebra was your Dotatate negative or positive?

@amyschwietz
My DOTATATE scan was negative because they determined I don’t have somatostatin receptors needed for that scan. The octreotide still works to treat my lung NETs and DIPNECH though. It has slowed tumor growth and managed my respiratory symptoms. I am monitored with CT scans with contrast. I did have a regular PET scan recently. Things are going well.

@californiazebra
I too had a negative Dotatate with little to no uptake and was told I should have never been put on Lanreotide dose 120(4 months) because it wouldn’t work for me. 50%(?) hair loss extreme pain in hip/pelvis and more cancer growth and spread 😢. My original site is lung to liver spine skull and bone.

@amyschwietz
I’m so sorry to hear what you’re dealing with. I’m sorry the lanreotide didn’t work for you and that your NETs has spread. Octreotide can still work and does for me thru other pathways. Causes diabetes and other issues but so much better than the chronic cough, mucus and shortness of breath I had for decades. I have fatigue, hair thinning, etc. but I’m also on meds for breast cancer and they all have similar side effects. Luckily, my lung NETs has stayed confined to my lungs all this time. I have typical carcinoids. Do you have the atypical more aggressive carcinoids that are more likely to spread? How are they treating you now? Do you have a NETs multidisciplinary team?

@californiazebra Thank you for the love ❤️
I have atypical carcinoid to the lung G2 ki 67 10 %. Stage 4. After 4 different drs I finally have a NET specialist with a multidisciplinary team.
Tomorrow is Bland Bead TAE on the right lobe of my liver; left side in 6 weeks (?) There is no Histotripsy in Nebraska.
Everolimus 2.5mg is next as soon as the extreme hair loss tapers. I’m trying to give my immune system a chance to recover.