DIPNECH

Hello @lrittmiller and welcome to the NETs support group on Mayo Connect. We have many members who have a similar diagnosis as you have. Here are links to those discussions. I would encourage you to read the posts in these discussions and then to click on "Reply" and to ask questions or voice any concerns you may have.
--Dipnech on lungs - does anyone have
https://connect.mayoclinic.org/discussion/carcinoid-dyptik-on-lungs-neuroendocrine-does-anyone-have/
--Carcinoid tumorlets neuroendocrine tumor cell hyperplasia dipnech
https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/
In these discussions you will meet members like @californiazebra @hollywood817 and others who will be able to share their experiences with you.

As this is your first post please share what symptoms led to this diagnosis

In addition to sharing more detail about your DIPNECH symptoms, in what way do you not feel like yourself? Perhaps you’re just feeling anxious due to being diagnosed with a new and rare medical condition? I had a partially collapsed lung after my lung biopsy. I was extremely fatigued and short of breath with chest pain. That greatly improved in a week or so.

After you read through the DIPNECH threads Teresa provided, please let me know if you have any additional questions about DIPNECH.

Hello @lrittmiller

I hope that the comments of @californiazebra are helpful to you. As you can see, she was also fatigued and short of breath after her lung biopsy. It did improve in a week.

How are you doing today?

I was Dx’d with DIPNECH post op after removal of right middle lobe Oct 2023. PET scan and biopsy showed malignant carcinoid tumor. Pre op scans showed multiple bumps and tumorlets in addition. Turned out it was “typical carcinoid” tumor. Tumor was found incidentally, thankfully! I had some shortness of breath on exertion and was sent for cardiology tests when they found the lung tumor. I feel fine now 9 mos later, but I do still have the SOB on exertion. I have some fatigue, but I’m also 75 yrs old. My biopsy by bronchoscopy did not cause any problems, just rested for 24 hrs. The more I read about DIPNECH, the more I understand the SOB on exertion can be a symptom , as well as my GERD. Best wishes to you!

Hello @jhhaas,

I appreciate you adding your experience to this conversation started by @lrittmiller. So many people diagnosed with carcinoids (in various locations) were diagnosed incidentally as you were. My experience was similar. It is always good to find these rare cancers earlier rather than later.

I'm glad to hear that you are feeling good since your surgery. Have you had any treatments other than surgery?

I was told when we destroyed my largest carcinoid tumor 2.6 cm with microwave ablation that it would not reduce my coughing and SOB upon exertion because it’s not the tumors we see on the scans that cause the symptoms. With DIPNECH my airways would be lined with hundreds or thousands of tiny tumorlets we can’t see on scans and those cause the symptoms. That’s where the octreotide injections come in and really improved my symptoms. My constant coughing for 30 years was the worst part for me.

Good to know. Just frustrating that no one ever suggested the SOB on exertion was related to DIPNECH. I read it on line. My lobectomy was because the largest tumor was cancerous and there were other tumors in that lobe and throughout the lungs. Thankfully I don’t have coughing, but I do plan to see a NET specialist for another opinion just to be sure I shouldn’t be on a treatment med. I went to MSK and they didn’t refer me anywhere except to a local pulmonologist - just scans every 6 mos so far. I feel fortunate - but want to make sure I shouldn’t be more proactive

No - I went to MSK and they said it was not needed at this point. Will get scanned every 6 mos. It’s just frustrating that other doctors really don’t know much about it. So, for example, my pcp, and even the local pulmonologist, don’t think to relate symptoms to that (DIPNECH). But I think I will head to a net specialist for a 2nd opinion. I have only seen the surgeon at MSK (whom I adore) - and he likely reviewed it with a tumor board, but I figure I’d rather be safe than sorry

Good plan to see a NETs team. DIPNECH is rare. Latest data I’ve read is 300 documented cases. Even the lead thoracic surgeon at my highly rated hospital hadn’t heard of it. I have a NETs team at UCLA now. My pulmonologist told me GERD was causing my coughing. Treatment for that didn’t help. It is the DIPNECH. I have 50+ carcinoid tumors 1 cm or more. Not all have been biopsied but any over 5 mm are considered malignant. They were first seen on a scan in 2008 yet I am still considered stage 1 for lung NETs with advanced DIPNECH. I will likely have more ablations in the future for any tumors that reach 2 cm or suddenly take off from the pack. Those are all the most likely to metastasize. These are very slow growing tumors and octreotide slows growth even more but not without side effects. I was told octreotide may lose its effectiveness at some point. I hope not. I couldn’t stand the coughing again and it would be a social problem again especially in a post-COVID world. Mostly I consider my DIPNECH to be a nuisance disorder. Actually lung NETs too unless it metastasizes at some point. You are wise to closely monitor the situation but I believe you have many good years ahead so enjoy your life. 🙂

Seeing a NETs specialist is the best way to ensure that you are on the right track, @jhhaas. NET specialists are few and far between. If there is not one in your immediate area, even a virtual consultation would be a good plan.

Mayo Clinic has NET specialists at all three of their locations. If you are interested in seeking a second opinion at Mayo, here is a link with information on obtaining an appointment, http://mayocl.in/1mtmR63.

If, for any reason, you cannot be seen at a Mayo location, here is list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I look forward to hearing from you again. Will you post again with questions or updates?