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Thank you all. This is really helpful. I should’ve been clear that I don’t have NETs. However, I do have DIPNECH- a small airway disease in my lungs. There are nodules in my lungs but they’re so small that my oncologist opted not to do a PET/Dotate scan. Hopefully, they’ll never develop into NETs. Of the drs. you all recommended, do any of them treat this condition with lanteotide? I do need a multidisciplinary facility. I’ve also watched YouTube videos of Dr Ramirez. He seems so knowledgeable, though the 4 hour distance is problematic.
Replies to "Thank you all. This is really helpful. I should’ve been clear that I don’t have NETs...."
@kdubbs
Also, you do have Emory University and Winship Cancer Institute there. Because DIPNECH is rare with only 300 documented cases, only a NETs team or someone studying rare lung diseases may have the treatment knowledge and experience (key) you need. Since Dr. Ramirez is very interested in DIPNECH, he likely knows of other lung NETs specialists who also are. Consider calling his office to ask if he can recommend anyone in the Atlanta area. DIPNECH is very slow growing. The rule of thumb is any nodule that reaches 5 mm is suspect as a carcinoid, but only a biopsy could confirm. Even if any do become carcinoids you’ll be okay. My DIPNECH issues started about 40 years ago. I’ve had carcinoids for at least 20 years and here I am doing well. 😊 Do you have respiratory issues?
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@kdubbs
I have both DIPNECH and lung NETs. Your best bet finding someone to treat DIPNECH is a NETs specialist because they are both neuroendocrine disorders. And since DIPNECH can progress to NETs you want someone that specializes in both. My local oncologist and pulmonologist were not very familiar with either disorder. My NETs team is at UCLA but that’s a 4 hour round trip for me so I do video visits with them and they coordinate with my local oncologist right across the street so I have my monthly octreotide injections locally. Very convenient. Octreotide stopped all the coughing and mucus and helped my shortness of breath while walking. I’ve been taking the injections for 5 years and it has been life changing for me. I already had NETs when diagnosed. I have no doubt Dr. Ramirez uses lanreotide and octreotide in his treatment plans. Best of luck.