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New DIPNECH diagnosis, need advice on doctors
Hi everyone. I’ve been reading comments the past few days but this is my first post. My mother who is 69 years old was just diagnosed with DIPNECH by her pulmonologist last week. I’m desperately searching for the best oncologist for her to see in the southern Oklahoma/far North Texas area. I’ve found a few doctors who seem to be specialists in Dallas, but don’t want to have her drive that far if she doesn’t have to. She was diagnosed with COPD a long time ago. She has frequent coughing fits and shortness of breath on exertion. My father died years ago from cancer and I hate that my mother has to go through this now. Any advice at all is appreciated. I’m a nurse which makes it much harder on my end and I just want to hear from others on where to go from here. Thank you so very much for your time if you’ve read this far down! Blessings to everyone out there.
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Hi,
I'm 67 years old. Have been mis-diagnosed for over 5 years. 2023 Dr. finally walks in and tells me he believes I have DIPNECH. I have been trying to tell my Dr's this is not asthma, I even changed Drs. Now unfortunately my Dr is not a DIPNECH Specialist. I want to find one immediately. Even though they say my lung nodules are not increasing, I feel worse with dispenia. I've learned how my cough
works. I find myself sitting alot, heaviness on just when doing most anything.
I need a Specialist.
Can someone help me find one. I am in Virginia, I will travel.
Thanks
@dipnech67
Robert Ramirez MD at Vanderbilt in Nashville is a NETS specialist who talks about DIPNECH more than anyone I’ve heard. I have DIPNECH that was misdiagnosed for 30 years. Monthly octreotide injections have really managed the symptoms well and been life changing. True that DIPNECH is slow growing but very symptomatic and can turn into lung NETs as mine did so it does need to be managed and monitored. I was told at UCLA that it’s not the 50+ tumors we can see that cause my respiratory issues but the hundreds or thousands of tiny nodules that line my airways that cause issues and octreotide helps that. Inhalers didn’t help. Hope this info helps. Zebra
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1 ReactionWelcome, @dipnech67, you are wise to seek a specialist. I'm sure you have seen the recommendation made by members in this discussion. You may also be interested in this journal article:
- DIPNECH: The Mayo experience. https://ascopubs.org/doi/10.1200/JCO.2019.37.15_suppl.e20029
If you would like to request a second opinion with a Mayo Clinic specialist, you can submit a request here: http://mayocl.in/1mtmR63
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1 ReactionSorry your going through this.
Thanks for your response. If you do not mind, I would like to ask some questions.
They say they do not know what causes it.
My question is. Did you ever live on a home with a basement. I only ask because I did, for 20 years. My home had Radon. They said it would not cause DIPNECH, but how would they know, with out asking questions like this to their patients. Now, let's say you did have a basement. You might not of known if you had Radon unless tested for it.
I'm just trying to find out the WHY!
If you know what I mean.
Also, most people are misdiagnosed. Well that's great. That just means there might be others that do not realize what they are really dealing with.
Look at you....for 30 years you had issues.
I'd like to be able to talk with you if you would be OK with it.
I'm from central Virginia. Amherst to be the location. Heck, I'm at the point we're I eant to speak to anyone and everyone going through this. From what I read about, there isn't very many of us and I'm sure we all want answers.
Maybe compare life styles to see if something triggers this dreadful stuff to appear.
Thanks for your remarks, hope to hear from you soon.
Why is the why so important? It still doesn't change anything. Use that energy towards finding the best care and treatment possible and fighting for your life. That will take all of the energy you have. Don't create more stress by focusing on what you can't change. Focus on your care.
Hi @dipnech67
I would be happy to speak with you. I just sent you a private message so please respond to that with your contact info. Please don't post any private information here.
I was just looking at radon maps and it seems all the places I've lived are areas at higher risk for radon although none of my homes were ever tested and it varies from house to house. In answer to your question, I only spent 2 years in a house with a basement. Having said all that, my parents also lived in higher radon areas their whole life. My mother's family has very little cancer and lived into their 80s and 90s in good health. My dad's side has most every kind of cancer and other health issues with a lot of people dying young, but no one else with NETs or DIPNECH that I know of. I have at least two genetic mutations for cancer so I'm guessing my brothers and grandparents who died young from cancer may have had those mutations or others.
So is it more environment or genetics? I always feel like genetics is the dominant factor for most medical issues and environment just puts its thumb on the scale. DIPNECH may or may not progress to lung NETs. I had asthma even as a child so maybe I've had DIPNECH from the beginning.
The most important thing to remember is that it is slow growing and treatable. Your symptoms can greatly improve. Better days are ahead. The diagnosis was the hardest part. Yes, there are probably a lot more DIPNECH peeps out there that just haven't been diagnosed yet. Most doctors, even pulmonologists, radiologists and thoracic surgeons, haven't heard of it. Spread the word. Looking forward to talking with you.
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1 Reaction@colleenyoung
Hi Colleen, I'm so glad you posted this article. Believe it or not, it was that very article that made me self-diagnose DIPNECH and present it to my breast oncologist who said, "I think you may be onto something." Once I was referred to a NETs team, they confirmed DIPNECH.
My 50+ lung nodules were misdiagnosed by at least 20 different specialists for a dozen years after they were discovered. Such a wide range of guesses from something benign and strange to metastatic cancer of some sort. When my breast cancer returned, I finally agreed to a lung biopsy to see if the lung tumors were related to the breast cancer and was diagnosed with lung NETs, I couldn't figure out why most people with lung NETs seemed to have a single tumor. Why did I have so many? Why was my case so baffling for so long an no one had even guessed it was lung NETs prior to the biopsy? So I started researching everything NETs and that's when I stumbled upon the Mayo article about the retro DIPNECH study. Voila! Thank you, Mayo!
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6 ReactionsWell, I believe in helping others who want the help. I want Dr's to be able to say what causes it rather than say they don't know. Maybe there is an avoidance in their lifestyle that needs to be avoided and people need to know.
I believe by comparing our life styles could help in solving the WHY.
Why do you think I found out my diagnosis earlier than most. It's because of the "WHY" and the Drs not having answers. If I can't get answers, I will spend my life helping others that have been grossly MISDIAGNOSED!!