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Anyone had surgery to remove typical carcinoids of the lung?

Neuroendocrine Tumors (NETs) | Last Active: Dec 7, 2023 | Replies (27)

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@pattirushing

I also have 2 carcinoids in my left lung and multiple, small other nodules. My tumor board recommended sbrt and I have my last treatment today. Then they want me to start on octreotide to hopefully keep the others from growing.

Did you do anything other than the radiation ablation? How often are you getting scanned. I'm nervous about the octreotide. Thank you.

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Replies to "I also have 2 carcinoids in my left lung and multiple, small other nodules. My tumor..."

Zebra | @californiazebra | Apr 18, 2023

Hi @pattirushing, octreotide and microwave ablation are the only two treatments I've had for my typical carcinoids/DIPNECH. I did have a DOTATATE Cu64 PET scan and we found I'm in the smaller percentage of people that don't have somatostatin receptors so I wouldn't be eligible for PRRT or more DOTATATE scans. We never discussed SBRT, maybe because I have so many tumors? My 50+ tumors are very slow growing. It's hopeful the octreotide will slow them down even more, but the octreotide is also to relieve symptoms of chronic coughing, shortness of breath and mucous and that it did. I love it for that reason! I have a tendency to get more med side effects on any med than most people.

Scans -- I had CT scans every 3 months for the first two years and now I'm about to have more next week after two years. They felt I was getting too much radiation. I get scans for my advanced breast cancer at the same time. The carcinoids are the far less concerning cancer of the two.

Octreotide 30 mg -- I get an injection at my oncology office every 4 weeks in the glute. It's quick and easy, stings a little, not bad at all. I started two other cancer meds two months before that for advanced breast cancer so it's a little hard for me to isolate side effects. I felt it added to my fatigue, more hair thinning but not baldness. Most significant is it raised my blood sugar so I am now mildly diabetic. I don't think that happens to everyone but good to watch. It also seemed to lower my blood pressure and heart rate more than the Kisqali was already doing. Too low. To me it's worth it because it relieved my 30 years of chronic coughing and shortness of breath when walking 50 feet. Life changing.

Microwave ablation (not radiation, but heat delivered through needles to burn and destroy the tumor) -- my interventional radiologist told me if any of my other tumors hit 2 cm, we will do microwave ablation on those. The last one was at 2.6 cm. Most of my 50+ tumors are around 1 cm. Larger ones are more likely to metastasize so that's why we'll get rid of those.