DIPNCEH

Hi @kole03
I hope you’re feeling well post lobectomy.

You need to be followed by a NETs team that would include a thoracic oncologist? Mayo and university hospitals will have one. Some other top hospitals may as well. I had to travel 60 miles to a university hospital because my local oncology team was not familiar with lung NETs or DIPNECH. Now that I’m established, I meet with my team through video calls and they coordinate with my local oncologist I already had for another cancer.

Do you have any respiratory symptoms connected to DIPNECH like coughing, shortness of breath or mucus? How many nodules do you have?

There are a lot of threads on lung NETs and DIPNECH on MayoConnect so you might want to read through all of those and then let us know what questions you still have. I’m glad you’ve been diagnosed and are on the other side of surgery.

Im so sorry you have to go through this. As someone else has said, it's very important to see a net specialist. A general oncologist usually doesn't have the required knowledge to properly treat this. You can search for one by state at https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/
Also at http://www.carcinoid.org.
Both those sites also have alot of great information to help you learn all you can.
All Mayo locations have specialists.
Best of luck to you

Hi I have 4 nodules. I am having shortness of breath. I cough more when I first get up in the morning.

I coughed all day every day for 30 years. Annoying to me and everyone around me. I started taking the monthly octreotide injections 4 years ago and within the first few months the coughing stopped, shortness of breath improved and chronic mucus issues greatly improved. Everyone I know commented on my lack of coughing. As a side benefit it also suppresses histamines so it has really helped all of my animal allergies and chemical sensitivity. It has been life changing for me. It also slows tumor growth but the nodules are so slow growing to begin with it’s hard to know what impact the injections have had on growth.

Hi, your story sounds like mine. I had right middle lobe removed October 2023 due to a malignant tumor. There were other smaller tumors in the same lobe which I believe is why they removed it instead of just removing the tumor. It was typical carcinoid, and I get scanned every six months. So far everything has remained stable. But was also diagnosed with DIPNECH, at the same time. I was treated and follow up with my surgeon at Memorial Sloane Kettering, and he referred me to a local pulmonologist. The problem is all of my other doctors don’t know much about NETs. Thankfully, so far, my only symptoms are some shortness of breath on exertion, which is not horrible, and a frequent clearing of my throat. I do not have the cough so many others have. I also have GERD which I’ve learned is also common. I generally feel pretty good, so have not pushed to get on treatments because I also hear about some of the side effects. But I do think I would feel better to be evaluated by a NET specialist to make sure they concur with what I’m doing. I have multiple tumorlets on other lobes, which so far have remained stable without any treatment. So I’m working on getting names of NET specialists to call, just to be safe. My MSK Dr says I’m very lucky and to go live my life and he’ll see me in 6 mos. I believe him, but when I mention any symptoms, he says go see my pulmonologist, and that doctor doesn’t really know about DIPNECH. So frustrating! Best wishes to you, I remember you are not alone.!

Sounds familiar to me. 4 carcinoids Stilll small. Not showing growth after 2 years. I wonder if my different hospitals are measuring them differently

I have GERD too. Before my DIPNECH and lung NETs was diagnosed even though we knew about all the nodules for a dozen years of incorrect guesses, my local pulmonologist told me my coughing was from GERD. I didn’t believe it and he wasn’t correct. I still have GERD but not the coughing due to the octreotide. My pulmonologist has one other DIPNECH patient but she’s asymptomatic and he didn’t even know about octreotide as a treatment. He’s really not interested in my case so I may switch to a pulmonologist on my NETs team at some point but oncology and the interventional radiologist are managing it well. You would think a specialist would be excited about following a rate disorder but I find they don’t want to invest time in learning about it when they may never have another case.

OMG. Yes yes yes so much the same. I was told by my pulmonary doctor that it might be DIPNECH but my oncologist does not say I have it. There are multiple tumorets but not growing. I still wonder if the different hospitals are correctly measuring them
Let's keep in touch

For many years, my CT reports would include measurements of the largest few nodules. I liked that as it made it easy for me to monitor growth since I’m not seeing the scans. But they don’t do that at the university hospital. The radiologist just notes stability or in the impression. Does stability mean no growth or just a little growth? Since I have over 50 nodules, that’s probably overwhelming to the radiologist and hard to compare each one or notice new ones. I’m really hoping AI will be used on the scans soon as AI could compare and give measurements for every nodule in a heartbeat.

Are you taking a treatment? So interesting, these various symptoms, like GERD! I had it for years and on meds before I ever knew about DIPNECH. About six years ago I had a horrible cough that would not go away despite various kinds of antibiotics and my doctor kept suggesting maybe it was allergies. Finally got tested for allergies and sure enough, it seems. I’m allergic to pretty much everything, so I just assumed That was causing a constant sort of postnasal drip kind of thing. They put me on allergy shots - got better, but the allergy markers never improved when I was retested. So they put me on Fasenra shots once a month, which is mainly to treat asthma, which I do not have, but also seems to work on allergies. I feel the same as before, but my absolute eosinophils went to zero in my blood work. And since that time, I have not even had a cold, or Covid or any other type of serious congestion. It was after all this that I then was diagnosed with the lung tumor and DIPNECH. But now I know it’s all related. I still take an OTC allergy med each day to control the sinus fluid, and although it’s probably not related, it sure feels like it must be. I feel pretty stable and that’s why I haven’t pushed to get on any other treatment. I also have great confidence in the MSK but he is the surgeon, though he is very aware and knowledgeable about NETs and DIPNECH. But he seems to expect that my local pulmonologist will know enough about it to handle my symptoms. And the local guy is very good in general, but if he doesn’t know about DIPNECH, it’s just hard.