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

Posted by nanabarbara @nanabarbara, 6 days ago

I have been diagnosed with both NETs-Lung and DIPNECH. Do I need two teams to be involved since I have two different conditions or one team can handle both? Also wondering which condition is better to concentrate on at this time. Ga 58 scan showed no ofther cancer any where else in body just nodules in the lungs. Still very confused about what DIPNECH is even after reading lots of info. Can someone explain it simply to me? Not sure that even the doctor I have seen understands it all. He claimed my cough had nothing to do with DIPNECH. I have read that is one of the main symptoms. After seeing this doctor I plan to go for a second opinion at another facility. Thanks for the help.

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Zebra | @californiazebra | 5 days ago

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?

jhhaas | @jhhaas | 5 days ago

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.