DIPNECH dr in GA- Atlanta

Call Atlanta Liver and Pancreas surgical specialists and ask to see Dr Sur.

My husband just had surgery for NETS through the Winship Cancer Institute at Emory University Hospital in Atlanta. Dr. Halperin is one of the NETS specialist there. My husband sees Dr. Kooby, but his NETS was on his liver. You may try calling Winship to see if they can help.

Dr. Halperin is good. I see him for my PRRT treatments.

Most NETs specialists seem to specialize in GI NETs rather than lung NETs. Handled differently. Not that many talk about DIPNECH that I've seen. Dr. Robert Ramirez DO at Vanderbilt in Nashville is very active with DIPNECH patients and treatment. Maybe 4 hours away from you, but he likely does video consults. He has several videos discussing DIPNECH on YouTube. You might consider a consult with him if you can't find anyone familiar with DIPNECH in Atlanta.

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.

@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.

@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?

Thank you so much for this wealth of information. I do have respiratory issues. However, since starting Lanreotide, they’ve improved dramatically. I’ve noticed the biggest difference with shortness of breath. It’s virtually gone. I still cough but I’ve only had 6 injections so I expect that to improve with time. My lung function has gone from a low 30% in March of 2025 to 73% in February of this year- so, technically, I’m within reach of where my lung function should be. (It should at 80% based on my demographic). Reaching out to Dr Ramirez’s office to see if they know anyone in the ATL area who’s knowledgeable about my condition sounds like a great starting point. I do have nodules but they are so tiny. I enjoy where I go in Eastern VA. My pulmonologist treats several people with this condition. He’s a part of the multidisciplinary team, along with my oncologist, who treats my condition. My current oncologist is very familiar with DIPNECH. Hoping I can still get that quality of care when I relocate. Thanks for all of your help.

@kdubbs
That is a huge increase in lung function! That’s great!!!

So you are relocating. Since video visits are covered now maybe stay with your current team via video and have them coordinate with a local provider to provide the shots?

Yes, I’ll be moving some time in the near future. My current team can’t coordinate with anyone local but I’m satisfied that.