1. < Lung Cancer

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.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Zebra | @californiazebra | Jan 7 1:45pm
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.

Jump to this post

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?

REPLY
lakecabin | @lakecabin | Jan 11 9:13am
In reply to @gig666 "I have Lungs NETS in both lungs. Recent growth, small amount now diagnosed with DIPNECH. I..." + (show)
@gig666

I have Lungs NETS in both lungs. Recent growth, small amount now diagnosed with DIPNECH. I was told the tubes in my right lung is mildly bronchiectasis, in my middle lobe. The tube is full of mucous causing my wheezing, coughing. To control any further blockage or growth have been put on Octreotide injection once a week.
Also, strange finding my mammogram of my right breast has many speckles not seen last year. Need to go back for ultrasound. Along with a burning sensation.under my right shoulder blade. Any comments on breast cancer found with Lung Neuroendocrine?

Jump to this post

Back in 2020 I was being treated for ductal carcinoma in my right breast. After surgery(lumpectomy), radiation I was pretty stable. Post 9 months in 2021 I was diagnosed with a Neuroendocrine Tumor in my left Lung. No one at the Mayo Clinic in Rochester, MN told me I had any nodules. My doctor at my Veterans Clinic mentioned I needed another CT for follow-up because of these. Total surprise to me. I ended up having a "Wedge" procedure where they removed part of my left upper lobe. Neither of these cancers were related or caused from my smoking.

REPLY
View MoreView Less
Please sign in or register to post a reply.