@pantfan
Just reading your story, it sure sounds like DIPNECH. First, I agree with others that you need to get a second opinion with a NETs specialist before you have any treatment. If your surgeon is not a NETs specialist, take a pause. NETs is not treated the same as other lung cancers. Do you have typical carcinoids -- the very slowing growing kind? Typical carcinoids and DIPNECH are non-smoking conditions and typically diagnosed in middle-aged women after years of symptoms and misdiagnoses. COPD is often one of the misdiagnoses. I kept being treated for asthma and the inhalers not only didn't help, they made my cough worse. Sorry you're allergic to contrast. That's unfortunate. I had one DOTATATE scan, but it turns out I don't have the somatostatin receptors so we just monitor with chest CTs every 6 months.

When I had my first chest CT in 2008 for chronic bronchitis, they discovered I had over 50 lung nodules spread across both lungs, all lobes. They couldn't reach any nodules for a needle biopsy and I refused an open chest biopsy. 20 specialists of all kinds took guesses over the next 12 years about what it was and were all wrong. In 2020, when my breast cancer (not related) came back, they said they could now do a needle biopsy on the largest 2.6 cm nodule in my LLL. They wanted to be sure it wasn't breast cancer spread there. They discovered it was a typical carcinoid. My own research led me to a Mayo article about DIPNECH and bingo, I knew that had to be it. I asked to be referred to the UCLA NETs team (away from the local thoracic surgeon my breast oncologist lined up for me). My breast oncologist knew nothing about NETs or DIPNECH. UCLA diagnosed me with DIPNECH based on scans, number of nodules, patterns, and various other lung issues they could see.

For me, they did not want to surgically remove the largest nodule because they want to preserve as much healthy lung tissue as possible given all lobes are affected. They did a microwave ablation (probes thru my back into the tumor) to destroy the tumor 5.5 years ago. It was successful and hasn't come back. They may need to ablate others in the future if one nodule starts to grow faster or behave differently from the rest. They'll destroy any like that to prevent metastasis which is less likely in typical carcinoids, but can happen. Based on symptoms, I've had DIPNECH/carcinoids for probably 40 years and it's still confined to my lungs. I hope you find that encouraging. It's great news!

I've been taking an octreotide injection every 28 days for 5 years and it stopped my cough, reduced mucus, helped shortness of breath and made me much, much less chemically sensitive to fragrances and cleaning agents. As a miracle side benefit it suppresses histamines and greatly improved my animal allergies so I can even pet animals for the first time in my adult life and go into homes with animals. I love animals! It has been life-changing! It does have some side effects, but they are so much better for me than the chronic cough was, I'll never stop taking the injections so long as they work. And, the octreotide is ordered by my NETs oncologist in Los Angeles, but I get the octreotide shots at my local breast oncology office so it's very convenient. A distant NETs team is willing to coordinate with a local team. I hope you can find the right providers and enjoy the same success.