I am not sure who is asking me about diagnostic methods for DIPNECH. I am thinking Mark? I can give you the short version as I understand it, or a longer one in my case because of newly found cardio involvement. Short version: Actual confirmation- PET scan with a specialized dye. Sometimes they do show up in other scans such as a bone scan or CAT. I think it depends on the size of the tumors. If you do not already know, they start usually quite small, making them difficult to detect until they begin to actually grow.
Long version: The consideration of presentation in a pt. i.e. facial flushing, coughing, phlegm in the back of throat.
I had been telling my GP even before my lung surgery that I was having chest pains irregular heart rhythm, and coughing up phlegm. She repeatedly downplayed each symptom. In fact, I went to the E.R. more than once with the same complaints. She finally ordered a stress test and I wore a heart monitor (of which I questioned it's placement) My GP only listened to my heart for literally seconds. She kept pronouncing it a possible heart murmur or slight arrhythmia. And I want to insert in here - DIPNECH can be mistakenly misdiagnosed as asthma or COPD, as there are similar symptoms.
I just had an echo. I believe it is my tricuspid valve that showed up regurgitating. I did more research and found heart involvement or Pulmonary Carcinoid/DIPNECH can also be tied into the cardiac component as well.
So, as I understand it, as least in my case, it was the co-mobilities that have set a picture for the final diagnosis of DIPNECH. To make it even more complicated, you can have DIPNECH with or (I am not sure of this) not turning slowly into carcinoid tumors (a type of NET)
NETs can also be found in the digestive tract. I do not know all that entails, as I have been overwhelmed with the knowledge of the lung version and that research alone.
Sorry the long version is SO long, but it is from my experiences and my research, and from the excellent knowledge gained from the precious people on this website. Blessings 💕