I am 75 and have carcinoid tumors NET in lungs

@azrosegold
That's a significant size. My largest was 2.6 cm and they destroyed it with microwave ablation to be sure it wouldn't metastasize. I was told our guideline will be to destroy any that reach 2 cm or start to behave differently from the rest of the pack such as growing much faster. Those that are just growing slowly over the years will just be monitored and are best left alone. Just know I've had DIPNECH/NETs for decades and it has never spread outside my lungs so that's really good news. Glad you had the large one removed.

Oh, I have also learned that specialists often ignore incidental findings when they are not related to the issue they are treating. That's a disservice to patients and they should have you discuss incidental findings with your primary doctor at the very least. This is exactly why I always read the scan reports myself so I can ask questions and do my own research.

@californiazebra I see my pulmo next week to go over my latest CT. Not sure if Mayo has a definitive protocol or if it’s a case by case basis for when to intervene when they see tumor growth. I’m also not sure if they do ablation. I will ask him. Are you seen at a large teaching hospital? Honestly I’m just now getting over the shock and recovering from my surgery and ready to become proactive! I’m trying not to micromanage my condition and trust in my providers while still being an informed patient. It’s kinda a fine line for me.

@azrosegold
Yes, I’m being seen at a university hospital. Most university hospitals and major cancer centers have neuroendocrine programs. Don’t feel like you need to get rid of every nodule. For DIPNECH you’ll mostly just monitor because you need to preserve healthy lung tissue and any removal or ablation takes some healthy tissue with it. It’s mostly about managing symptoms if you have any. Did they say you have typical carcinoids? They are slow growing and mostly stay confined.

@azrosegold Good luck with your pulmonology appointment this week? Is it at Mayo in Phoenix?

@tomrennie yes. I have my list of questions from my CT results
1. New 27 mm tumor R lower lobe?
2. At what point do you intervene when new growths appear? Rate of growth, overall size? Location?
3 is there a true protocol or is it literally case by case?
4. If location of tumor is accessible is ablation first line? Ablation was never discussed with the tumor I had removed last year.
I’m totally asymptomatic but want to stay ahead of this is possible.
I welcome any suggestions for other issues I should discuss with my Dr.

Hi,
They discovered a 8 mm lung nodule in 2020 when I had to have heart triple bypass. Nodule grew slowly and I had a biopsy in 2023 when it had grown to about 14 mm. . It was benign so it ws decided to watch and wait. Had another biopsy in 2025 and it was 19 mm and was now dotatate + and diagnosed as NET. Oncologists have recommended right lower lobe lobectomy but that has now been delayed due to heart issues and surgical risk I am now supposed to have a cardiac catheterization to determine if it is safe to undergo lobectomy. No one has ever mentioned ablation as an alternative. Lung Net specialist said treatment with radiation not as effective . Please suggest other options beside a risky lobectomy due to heart issues. Age 76. Thanks

@azrosegold I too get treated at Mayo Phoenix and have a pulmonologist to deal with lung issues. Your questions sound great. Have you met the pulmonologist before?

@stephanieann Here is a pretty good article from the American Cancer Society on treatment options for lung NETs. Please take a look at it, and let me know if you have any questions.
https://www.cancer.org/cancer/types/lung-carcinoid-tumor/treating.html

@tomrennie saw the Dr yesterday. Apparently the 27 mm nodule was a charting error by the radiologist. The pulmonologist looked through all the images and did not see anything even close to that size. He messaged radiologist and asked them to clarify. While that is a huge relief it doesn’t erase the last 2 weeks of worrying. If it truly was an error my tumors are stable and I don’t need a f/u scan for 6 months. Just another example of my love hate relationship with patient portals.

@azrosegold I was on a Mayo NETs support group call recently. Dr. Thor Halfdanarson from Mayo was the guest speaker. He was asked what imaging technique is best to view NETs. He responded the one with the best technician. His comment really hit home with me. It also applies to the radiologist reading the images. Unfortunately, people aren't perfect. It is great that you brought this up to the pulmonologist and he took action. Having a great team catches individual human error. Why the love hate relationship with patient portals? I am curious?