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New DIPNECH diagnosis, need advice on doctors
Neuroendocrine Tumors (NETs) | Last Active: Nov 17, 2024 | Replies (39)Comment receiving replies
Sorry 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.
Replies to "Sorry your going through this. Thanks for your response. If you do not mind, I would..."
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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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.