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What tests should be part of a surveillance protocol for lung NETs?
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (38)Comment receiving replies
@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?
Replies to "@haelsky, I'm tagging a few other members living with lung NETs like @ineedawhale @jessicamc @californiazebra @ggiinnaa..."
@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.
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@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.