DO I need 2 teams if I have both Nets-lung and DIPNECH?

You just need one NETs team as the two conditions are related. You’ll treat them at the same time. It started out as DIPNECH with benign nodules that eventually turned in cancerous NETs as they grew, most likely slowly. People with DIPNECH tend to have more nodules and are more symptomatic than people with just NETs. Your cough is from the DIPNECH and is treatable with monthly octreotide injections. If only NETs, it is often just one nodule/tumor and is surgically removed. DIPNECH tends to have nodules all over so it’s managed differently. You’ve likely had DIPNECH a long time. It’s so slow growing you’ll be around a long, long time. Was that explanation helpful?

Great explanation! I also have both, but not needing treatment at this point. It can be so frustrating though because so few doctors recognize the symptoms of DIPNECH. I don’t really have a cough, thankfully, but a frequent clearing of my throat. When I looked up the symptoms of.DIPNECH after diagnosis, everything just seemed to click into place. Shortness of breath on exertion is something I’ve experienced for many years. I was always told it was due to deconditioning. GERD – I’ve been on medication for that for years and was surprised to find out that can be a symptom. I found out I had it went a malignant lung tumor was found in incidentally, and they removed my right middle lobe. Grateful that is gone now, but I still have the same symptoms, which now I know is due to.DIPNECH. Thankfully, my tumor was “typical net“ and two years later I am holding my own. I get scanned every six months, and for me, I just find it helpful to know the cause of the symptoms that I still have. I can live with them. But I’m happier knowing what it is, if that makes sense. To me it was the not knowing that caused me angst.

DIPNECH means there are too many
neuroendocrine cells growing abnormally in the lining of your small airways.

I just watched lunch with docs on YouTube from CCF carcinoid cancer foundation with Robert Ramirez DO who is a lung NETs/DIPNECH specialist at Vanderbilt University Hospital in Nashville. I like to watch his videos because he mentions DIPNECH more than anyone. He said Vanderbilt now has 80 DIPNECH patients! Many from around the country. That’s huge considering how rare it is.

He received a few DIPNECH questions yesterday and confirmed what I’ve been told. A lot of lung NETs patients don’t have the somatostatin receptors (like me) so the DOTATATE scan doesn’t help. He only does the DOTATATE PET scan once and then uses CT scans for ongoing monitoring. If lung NETs only, then the tumor is removed followed by chest CTs every 6 months for 2 years and annually for 10 years. If DIPNECH with multiple nodules then no surgery, mostly monitoring, as healthy lung tissue needs to be preserved. DIPNECH often causes coughing and shortness of breath. Often treated with SSAs (like octreotide injections I’m taking) Cause of DIPNECH is unknown but typically hits middle-aged women. He said you must consult a NETs team. There are no thoracic surgeons that only treat NETs because it’s too rare (only 2% of lung cancer cases) but it is advisable to use a thoracic surgeon who specializes in lung cancer. All this matches what I’ve been told by my NETs specialists. Hope that helps.