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146 total results
Comments (141)
Hi @netnan, I was diagnosed with a 17mm typical carcinoid early this year. I also have...
https://connect.mayoclinic.org/comment/1107076/
I also have many nodules from DIPNECH ... if the tumor is ‘shrinking’ and the dipnech
Hello @ocean3131 and welcome to the NETs support group on Mayo Connect. I'm sorry to hear...
https://connect.mayoclinic.org/comment/987604/
another discussion group that deals with Dipnech ... carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech ... pulmonary neuroendocrine cell hyperplasia (DIPNECH
Hi @bcraft. I'm new to this site too and what brought me here was a search...
https://connect.mayoclinic.org/comment/838450/
brought me here was a search about DIPNECH ... NETs/DIPNECH is not treated like regular ... The good news about DIPNECH is it' ... DIPNECH is often misdiagnosed as COPD ... Search his name and DIPNECH and DIPNCH
I do actually go to Mayo-pulmonologist. He said Dipnech is a label that is hard to...
https://connect.mayoclinic.org/comment/846032/
He said Dipnech is a label that is hard
Hi tatteesmom3, are you seeing a NETS (neuroendocrine tumor) multidisiciplinary team or just a local oncologist...
https://connect.mayoclinic.org/comment/844936/
tumors across both lungs and I have DIPNECH ... Most doctors have not heard of DIPNECH ... actually the first one to suggest DIPNECH ... Not everyone with DIPNECH does, but ... DIPNECH is mostly diagnosed in non-smoking
I would strongly request a PET. I've had one recently to see if my dipnech tumours...
https://connect.mayoclinic.org/comment/1142721/
#39;ve had one recently to see if my dipnech
Thank you for your response. I too have the carcinoid tumors and DIPNECH. Just getting started...
https://connect.mayoclinic.org/comment/1160949/
too have the carcinoid tumors and DIPNECH
I have been diagnosed with a VERY rare lung disease called DIPNECH. Saw the expert at...
https://connect.mayoclinic.org/comment/1162603/
with a VERY rare lung disease called DIPNECH
Doctor recommended another test before making the surgery decision. A Netscan. We'll see what that indicates...
https://connect.mayoclinic.org/comment/660238/
Has anyone any experience with DIPNECH
You are Right about being your own Advocate. That's how I found out I had DIPNECH....
https://connect.mayoclinic.org/comment/1065383/
That's how I found out I had DIPNECH ... I'm also looking for a DIPNECH Specialist
Do you see a pulmonologist or oncologist? Reason I’m asking I was told there’s only 1...
https://connect.mayoclinic.org/comment/853997/
there’s only 1 doctor knowledgeable in dipnech
Hi @californiazebra This tumor that was ablated was the only one that the dotatate pet ‘lit’...
https://connect.mayoclinic.org/comment/1071219/
I have many small tumors with the DIPNECH
Welcome @triveraderubio As you likely know "diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is a rare...
https://connect.mayoclinic.org/comment/772200/
pulmonary neuroendocrine cell hyperplasia (DIPNECH ... amd12 has also been diagnosed with DIPNECH
I coughed constantly for 30 years due to lung NETs and DIPNECH but octreotide injections for...
https://connect.mayoclinic.org/comment/1067737/
for 30 years due to lung NETs and DIPNECH
Hi, I'm 67 years old. Have been mis-diagnosed for over 5 years. 2023 Dr. finally walks...
https://connect.mayoclinic.org/comment/1054374/
in and tells me he believes I have DIPNECH ... Now unfortunately my Dr is not a DIPNECH
@meryls12, you may wish to consult with the leading NETs team at Mayo Clinic in Jacksonville...
https://connect.mayoclinic.org/comment/968224/
pulmonary neuroendocrine cell hyperplasia (DIPNECH
@colleenyoung Hi Colleen, I'm so glad you posted this article. Believe it or not, it was...
https://connect.mayoclinic.org/comment/1055394/
article that made me self-diagnose DIPNECH ... referred to a NETs team, they confirmed DIPNECH ... upon the Mayo article about the retro DIPNECH
Hi @dipnech67 I would be happy to speak with you. I just sent you a private...
https://connect.mayoclinic.org/comment/1055386/
Hi @dipnech67
I would be happy to ... young, but no one else with NETs or DIPNECH ... DIPNECH may or may not progress to lung ... even as a child so maybe I've had DIPNECH ... Yes, there are probably a lot more DIPNECH
@jhhaas Good idea to get a second opinion. Glad you don’t have coughing. Octreotide also helps...
https://connect.mayoclinic.org/comment/1143685/
people can live a very long time with DIPNECH
Hi @queengemini16 What is your surgeon’s and oncologist’s recommended course of action? Are you planning to...
https://connect.mayoclinic.org/comment/1006882/
than what you’ve read here in the DIPNECH
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