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Concerns after lobectomy for carcinoid tumor in lung

Posted by kristin3 @kristin3, Apr 25, 2023

I had a lobectomy 6 months ago for carcinoid tumor. After my 6 month follow up CT scan they found more nodules on other lung that we're there and never mentioned. Now Im a little upset not sure I would have had the lobectomy so quickly.

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Zebra | @californiazebra | 1 day ago
In reply to @dougmck "Thank you very much for your post. I've been dealing with lung nodules cropping up since..." + (show)
@dougmck

Thank you very much for your post. I've been dealing with lung nodules cropping up since 2018 and have had radiation treatments five times now, and I've been informed I can't get any more radiation. I'm seen at UCSF, and whenever I've brought up using ablation my oncologist knows very little about it and very few doctors seem to use it. You're the first person I've read about who has had experience with it. I'm glad it was successful. Maybe I need to check out UCLA for any further treatments.

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Hi @dougmck
Are your lung nodules typical carcinoids, other lung cancer or small benign nodules? DIPNECH? Interesting that you are getting more and more of them. I had 50+ from the moment they were first spotted in 2008. I don't know if they all started at once, but it seems so. What radiation treatments did you have? PRRT? Or the standard radiation treatments like I had for my recurrent breast cancer, but they tried their hardest to miss my lungs. Has the radiation impacted your breathing? The breast cancer radiation on my chest wall left a thin layer of scar tissue over my right lung, but hasn't impacted my breathing so far. Apparently, it can still happen in the future. Have your tumors caused respiratory issues?

The gold standard is to remove the a lung NET tumor and even the lung lobe, but when you have tumors over every inch of your lungs, that's not an option. I need to preserve every bit of healthy lung tissue I have. So that's why the ablation. Much less invasive than surgery too.

How large are your tumors? Growing fast or slowly? If lung NETs, are you a candidate for PRRT? I'm not because the DOTATATE PET scan showed I don't have somatostatin receptors. If you have NETs and are at UCSF, you are probably being treated by a NETs multidisciplinary team?

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