Anyone living long-term with DIPNECH on lungs?

@nannybb no, I have not ever had flushing. I know that is one of the symptoms they look for or ask me about at my CT follow up appointments. But I never have had that so far. I think it is more likely to happen when your nets are“atypical“. Postop biopsy showed mine were “typical“. Sorry if I responded to this already.

Hi @rogo

It seems like we’ve communicated in the past. I have DIPNECH and lung NETs (typical carcinoids). Over 50 lung tumors scattered across both lungs. They were discovered 16 years ago when I had my first chest CT. It took years to properly diagnose it. Based on symptoms, I’ve had DIPNECH at least 30 years. My interventional radiologist also told me I’ve likely had this for decades. I have been taking octreotide injections for 3 years and that has been life changing stopping the chronic coughing and constant clear mucus all day. My shortness of breath upon exertion has improved but is not gone. I’ve always had asthma, allergies to animals, chemical sensitivity and that is all greatly improved so was clearly tied to DIPNECH to some degree. I’m honestly wondering now if you can be born with it since my respiratory issues started at birth. My IR told me it’s the hundreds or thousands of tiny tumors lining my airways that don’t show up on a scan that cause the respiratory symptoms.

Bottom line. It’s all very slow growing. We destroyed my largest tumor with microwave ablation 2.6 cm. Most are a little under or over 1 cm. We will destroy any others that start to grow faster than the rest or over 2 cm. After all these years it doesn’t appear any of it has spread outside my lungs. I’m 65 and I don’t expect to die from DIPNECH or NETs so I really don’t worry about it. We monitor with CT scans every 6 months. I only hope the octreotide keeps managing my symptoms. I think you’ll be fine so long as you monitor for any sudden growth. Consider octreotide if respiratory symptoms bother you. It also slows tumor growth but does have side effects. Best of luck. Enjoy your life. To me, this is all a nuisance disorder.

@gprior Hi Gloria.
Sorry you have a tumor by your heart and need more surgery. No, my tumors are not near anything other than scattered across both lungs. I was told if someone has one tumor they will likely remove the lobe it is in, but since I have over 50 tumors, we can’t remove all my lobes and want to preserve as much healthy lung tissue as possible. That’s why I had microwave ablation. We only did it on the largest tumor because they were worried it might metastasize. We will do others in the future if any suddenly take off from the pack. Are you being treated by a multidisciplinary NETs team?

I have breast cancer too and my local BC oncologist was just going to refer me to a thoracic surgeon until my pulmonologist told me about NETs specialists. My treatment would have likely been very different without that good advice. Experience with NETs counts. My NETs team is an hour away. Blessings to you.

I have also been diagnosed with DIPNECH and have probably had for 20 years. I have 20 tumorlets spread on both lungs. My cough became chronic and unbearable three years ago. What are the side effects from octreotide? Have you lost your hair or has it thinned?

@californiazebra definitely understudied. I am told it’s believed to be more widespread than originally thought. It also seems to be more researched in Europe than the U.S. I suspect there is a genetic component as well, but we will see what Dr. Merrick’s study shows. I think a big problem is that DIPNECH does not have its own diagnosis, making it difficult to track.

@californiazebra Zebra, just saw this post. Was wondering, did you have any reoccurring bouts of pneumonia as a child or later in life? After reading your post, I realized I had a cough too, but the clearing of my throat and spitting up the results was also a constant problem. I brought it up to my G.P. but she never addressed it. That has gotten 100% better for me with the shots. I think I have said this before, so glad you can enjoy animals now. I would live to get another kitty 🐱. Hope you are feeling much better today. 💕

@californiazebra Zebra, were you told you might have to repeat the ablation? Like every 6 months? Is there a difference in "microwave" as opposed to a "freezing"? And were you put under for the procedure? I was told yesterday if I go through with it, it might destroy healthy lung tissue around the site, I could get an infection, and they would give me some pain meds., but I would be awake. The second nerve block really hurt, which I looked at as a good thing, because I figured they finally found the right nerve bundle. The N.P. said the ablation would probably be even more painful. And would have to likely be repeated every 6 months. What to do??

@marciamiller Hey Marcia, I am on the 3 times a day, self-administered injections. I chose that route initially to see what side effects I might get. I figured they would be obviously easier to stop than having the drug in my system for almost a month with the I.M. version. I found my side effects to be somewhat mild. A slight change in my taste buds, and a little bit of hair loss. The worst has been overwhelming fatigue. I literally could sleep for 12 hours at a time. I'm hoping if I go to the I.M. version that will get better. I've been told it most likely will. The shots have helped with the constant cough and throat clearing. That has been a blessing. Hope this helps. 💕

@nvent5
I didn’t know that, but you’re right. I just looked it up and DIPNECH is tracked under “other lung disorders” and “other neuroendocrine” catch all diagnosis codes. That’s a problem and I hope it changes soon.

@nannybb
If the ablation is successful then no repeat is necessary. My 2.6 cm tumor was successfully ablated 5 years ago and has not grown back. Yes, it destroys a little healthy tissue around it to be sure margins are clear but way less than having lines revised or wedge resections. Also no anesthesia. My interventional radiologist told me most nerve endings in the lung are around the edges. Mine was centrally located so I didn’t not have pain from the ablation but a lot of discomfort from the invasion and staying in one position face down on a hard CT table was brutal for my pressure driven neuropathy and landed me in PT for 2 months. Normal bodies would be okay with it. I got a partially collapsed lung from the ablation and from the earlier biopsy. Both cleared up in a week at home. The reason you stay awake is you have to hold your breath each time you go into the CT machine which was about 20 times as he continued to position the probes. The ablation itself was about 15-20 min once the probes were in place. I read cryo is used more often now. He told me microwave would cause more pain in a high nerve area so he would use cryo there. I hope to not ablate other tumors but may have to if one starts misbehaving. Not all DIPNECH nodules need to be removed if ablated. The goal is to preserve as much healthy lung tissue as possible especially since I have over 50 visible nodules. They said they gave me something to relax but sedatives and pain meds have no effect on me. I would be concerned about that in a high nerve location. If meds work for you then you’d be fine. I have genetic issues that keep me from metabolizing meds properly. Huge problem. If you’re hearing repeat ablations on the same tumor, maybe that provider doesn’t have the necessary skill?