Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Hello @ocean3131, as @hopeful33250 mentioned, I have moved your discussion and combined it with an existing discussion titled, "Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH" - https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/. Here you can meet other members discussing their diagnosis of DIPNECH.

Hi @ocean3131
I also have DIPNECH and you can read my other posts for more details but coughing constantly for 30 years was a nightmare. Also coughed up clear mucus all day and had shortness of breath issues. I’ve been taking monthly octreotide injections for almost 3 years now and it has been life changing in stopping the cough and mucus and improving the shortness of breath. It was like I had bronchitis for 30 years straight. It annoyed me and everyone around me so we’re all thankful for octreotide.

Have you seen a NETs specialist? I was told the symptoms are not caused by the tumors we can see but by hundreds or thousands of tiny nodules that line my airways and don’t show up on the CT scan. You need someone who has treated other DIPNECH patients. My case is managed by a multidisciplinary lung NETs team at UCLA but I receive the injections at my local breast oncology office (I have breast cancer too) so I don’t have to drive to LA for them. Very convenient. I have video calls with my UCLA lung team. You came to the right group. DIPNECH is rare. Feel free to send me a private message as well.

I too have small carcinoids in my lungs. In August 2022 I had my right upper lobe removed with a small section of my right lower lobe. I have a cough. I was told to enjoy life, not to worry, and have cat scans every 6 months. If the carcinoids grow then they consider treatment
I try to enjoy life but the cough is not fun and I do worry if I shoujd be having treatments now

@ggiinnaa You'll enjoy life a lot more without the chronic cough. Ask about octreotide injections. Life changing for me after 30 years of coughing all day long. Best of luck.

Thank you

@rogo, we share a few similarities. I've also been incorrectly diagnosed with asthma for over 30 years. I was alerted to significant lung concerns via a CT scan after an auto accident. I was then incorrectly diagnosed with and treated for Bronchiectasis for three years. A team of lung specialists finally agreed I did not have Bronchiectasis and ordered a lung biopsy that showed carcinoid cells in a suspicious tumor. It also lit up in a PET scan. Meantime, I was coughing worse and worse. DIPNECH was suspected by the surgeon, who at last removed the tumor, which required a lingulaectomy. The tumor was benign, very surprisingly so, perhaps miraculously. DIPNECH was a positive finding consisting of the hyperplasia of many tumorlets. I am only two months out from that unpleasant surgery/recovery. The best result so far is that I am no longer coughing. I am also 70 years old, which was the overriding factor in having the surgery now. I was able to change my insurance in the Medicare Jan-March 31 Open Enrollment so that I can see the only doctor in my area who is trained in treating DIPNECH: Dr Heloise Soares @ Huntsman Cancer Institute. I will have all my baseline labs with her in May. Most likely, unless more concerns are found, I will be on the same trajectory as you. I will update you after my labs. Best wishes to you.

I wish you well . It’s been 8 years since my diagnosis. I still go for ct scans one a year and lung X-ray once a year. The word STABLE is my best friend. I had the surgery 1 1/2 years ago. I still cough occasionally but other than shortness of breath I do everything. I walk for miles and travel around the world. I trust that they told me they are very very slow growing tumors. So enjoy life and I wish you well. Please feel free to reach out to me anytime to discuss. You can even call me and talk in person. Thanks Rona