Concerns after lobectomy for carcinoid tumor in lung

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?

I have breast cancer as well as lung NETs and DIPNECH. My breast cancer is unrelated; however, there are others on Mayo Connect that have breast NETs.

I had bronchiestasis and every other issue with lung NETs and DIPNECH. Has the octreotide helped? It took a couple months for me to notice any difference and almost all respiratory symptoms were gone after a few months. Hope you have the same experience.

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.

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?

Did you do a FDG PET or Dontatate Scan before surgery to see what light up? They can’t go based iff a Full Chest CT.

@kristin3 -- typical carcinoids are the best kind to have. They are the slow growing kind. I understand why you were upset that they didn't mention the other tumors. Are the other ones small? How many? I wonder if you might have DIPNECH also since that causes multiple tumors in both lungs. DIPNECH can be a precursor to carcinoids. I just had my 6 month CT scans and no significant changes in tumor size with any of them. They first discovered mine in 2008 and it took a decade for them to double in size. Good luck with your oncology visits. Again, my oncology team only wants to destroy tumors if they reach 2 cm.

DIPNECH also usually causes respiratory symptoms. Do you have any symptoms such as chronic coughing for no apparent reason and shortness of breath upon exertion? My carcinoids/DIPNECH are treated with octreotide injections to slow growth even more and to treat symptoms. It took my coughing away and reduced shortness of breath. It has been life changing for me.

If you haven't already, check out discussions on neuroendocrine cancer for more info. I posted an informational video overview for that.

I am seeing my Oncologist in 2 weeks. I see him every 6 months and my Thoracic Oncologist every 6 months with repeat CT scans . Thank you so much for everything.

Thank you so much. My carcinoid was a typical. and 4.7cm. I was upset because they never mention the others on any previous CT scans until after my lobectomy.

Hi @kristin3, I have over 50 typical carcinoid tumors/DIPNECH across both lungs. Because I have so many, they did not consider a lobectomy, but they did want to get rid of the largest tumor 2.6 cm to reduce risk of metastasis. They sent me to an interventional radiologist at UCLA who used microwave tumor ablation to destroy the largest tumor 2 years ago. It worked. He told me we will do it again on any tumors that reach 2 cm. Most are about 1 cm right now. He doesn't feel we need to remove all of them and told me he and I will be partners for a long time as these are slow growing -- more of a chronic condition. You might ask your doctors about microwave ablation if they suggest removing additional tumors.

MICROWAVE ABLATION: Invasive with needles like a biospy, but non-surgical. It took 2 hours while I was awake and didn't really hurt. Just hard to lie face down without moving for 2 hours on CT table because they had to send me in and out of the CT scanner 25 times to check the location of the ablation needles. Had to be sure they were properly placed before frying that tumor.

Like Lisa mentioned above, I also read my radiology reports through the patient portal prior to appointments and have my questions ready especially about incidental findings. I love to ask my interventional radiologist when we talk after periodic scans because he has the expertise to look at the image right in front of him, see if he agrees with the radiologist who wrote the report, and even compare what he sees to my previous scans to see if it was something there all along and just never mentioned before. He's so patient and nice. His NP told me people come from all over the country to see him. If your doctors want to talk to him about microwave ablation, his name is Scott Genshaft MD, Interventional Radiologist, UCLA. I hope this helps.

Do you know what type of carcinoid you had removed? Typical or atypical?