@californiazebra Hi, and thank you for replying. I am so glad I found this forum!
I also discovered the Dipnech phenomenon after doing a lot of research. I believe I definitely fit the Dipnech profile as I've had multiple small nodules on my scans from 30 years ago. I was also treated for asthma and COPD for many years without any success. I could not tolerate any of the inhalers, which made me cough more. My pulmonolgist did not understand why this was happening. I was also treated for allergies without any success. Not many doctors know about Dipnech, not even my lung oncologist did (he had to look it up!).
I also refused the open biopsy and had navigational broncoscopy instead. It's a robotic biopsy which is performed by running a scope through the airways. The biopsy showed a low-grade carcinoid with Ki-67 <5% and no necrosis or lymph node involvment. Unfortunately, they could not distinguish between typical or atypical, and recommended a surgucal resection in order to determine the type.
My doctors did not have any idea about what tumor ablation is. I was steered toward surgery immediately after the biopsy. No one wanted to discuss my other nodules. They suggested SBRT as an alternative if surgery was not an option. I refuse to do radiation. I've had so many scans throughout the years, I wonder if maybe the radiation contributed to my issue?
I'm glad you found an oncologist who was willing to order the microwave ablation to successfully treat the tumor and preserve your lung function. My lung function is compromised due to the chronic cough, and surgery will make it worse. I am looking forward to finding a NET specialist who will help me determine the best treatment for my situation and preserve my lung function. Octreotide injections seem to be working for many Dipnech patients. I also have allergies to animals, parfumes, many odors and dust. Each NET patient needs an individual approach, as there are so many different scenarios.