Anyone had surgery to remove typical carcinoids of the lung?

Hi mcohan, I recommend LACNETS.org for tons of info on NETS. It's a support organization, not a medical group. Lots of NETS specialists interact with that organization. Since it's a rare disorder, lots of NETS specialists across the country know each other. You can find videos on that site or youtube regarding typical carcinoids. Robert Ramirez MD (Vanderbilt University now) has a lot of experience with lung NETS so check out his videos. More NETS specialists will discuss GI NETS since that is more comment.

I met a lady through the LACNETS website that had one really large typical carcinoid (3") removed 10 years ago. She had one (I believe) lobe removed. She never had any other treatment. She can breathe just fine. I think she was 70 when she had surgery. She has had an annual scan every year as a followup, but they have all been clear. I'm very hopeful that your case will go just as well and you will be back to normal life soon.

Are you seeing a NETS multidisciplinary team of doctors? Not all doctors are familiar with NETS. Best to go with experience. If not close to home, they can work with your local team as advisors.

Also, I have over 50 typical carcinoids across both lungs so too many to remove. I have so many because I also have an ever rarer lung condition called DIPNECH that causes multiple tumors. They were concerned about leaving the largest tumor 2.6 cm for fear it might metastasize, so they used microwave ablation to destroy it. Invasive, but non surgical -- took 2 hours through an interventional radiologist at UCLA. He's wonderful. It worked, it was completely fried and is just an internal scar now. I believe lobectomy is the more typical treatment for typical carninoids, but is it because microwave ablation is a newer approach? I don't know, but it might be worth asking about it.

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.

Thanks for all that info. I will certainly look up the website you suggested.
The carcinoids were found inadvertently through scans I was having done for colon cancer.
Good news is that are not related to my colon cancer.
I had my right colon removed robotically on March 30.
Was discharged the next day. I am recovering from that well. It was really an easy surgery.
That had to come first before carcinoid surgery.
I will need a round of chemo since the colon cancer had spread to two lymph nodes.
I have not yet with the oncologist.
Chemo will come before lung surgery
I have a wonderful team of doctors at Emory Hospital in Atlanta. Winship cancer institute
Happy to hear that the ablation went well for you and thanks for the other info.

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.

I hope this info helps. Best of luck with your treatments.

Thank you so much for sharing your journey. Wishing you good health and lots of adventures! I will have my first scan in 3 months and feeling better about the octreotide. Hoping it keeps the other nodules from growing!

Hello @pattirushing

I'm glad to hear that you have completed the initial treatment for the lung carcinoids. It sounds like you did not have many side-effects.

When will you begin the octreotide injections?

I started on Friday! So far no side effects! Have a beautiful weekend!

Have started the octreotide and so far so good.

Oh wow, dealing with two separate primary cancers is rough. I hope recovery from colorectal cancer surgery continues to go well.

Here are a few discussions related to lobectomy that may interest you:
- Robotic Lobectomy: What can I expect? What is recovery like? https://connect.mayoclinic.org/discussion/hello-from-the-bluegrass-state/
- Lobectomy scheduled—What kind of home help will I need? https://connect.mayoclinic.org/discussion/lobectomy-scheduled-what-kind-of-home-help-will-i-need/
- My husband had lobectomy surgery: Mayo was wonderful! https://connect.mayoclinic.org/discussion/mayo-was-wonderful/

Do you know if you will have robotic surgery? When will you start chemo?

I am meeting with the oncologist next week to discuss chemo.

I feel great from my colon surgery.. surgery one day.. out the next!

I met with the thoracic surgeon. He will need to remove my lower right lobe with the 2 carcinoids.

That surgery scares me the most.

I will have chemo first.

I am 71 years old and in good health besides my cancer issues.