1. < Neuroendocrine Tumors (NETs)

I am 75 and have carcinoid tumors NET in lungs

Posted by ggiinnaa @ggiinnaa, Apr 18 7:59am

One doctor suggested that I have DIPNECH I do have small carcinoids throughout my lungs. They were discovered when an Adenocarcinoma and my top right lung lobe was removed. I would love to hear from anyone with DIPNECH or carcinoid lung NET

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

ggiinnaa | @ggiinnaa | Apr 23 4:00pm
In reply to @sadragliz "I also have NET and DIPNECH. Both were found in August of 2024 when my tumor..." + (show)
@sadragliz

I also have NET and DIPNECH. Both were found in August of 2024 when my tumor in my lung was removed. I never had a cough but have always had to clear my throat. I am given a blood test every 3 months and CT every 3 months after that. So far I have two very small spots on my right lung that we are watching for any changes. My left lung is where my surgery was. So far no carcinoids either. Wish there was more info on DIPNECH, as sad as it sounds, I am glad I am not alone in this journey. I am of polish decent. God Bless you all.

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I wish you the best. Please keep us posted. It helps me a lot knowing there are others. I never smoked and letting friends know I had lung cancer was difficult. Thank you

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1 reply
Zebra | @californiazebra | Apr 23 5:59pm
In reply to @ggiinnaa "I wish you the best. Please keep us posted. It helps me a lot knowing there..." + (show)
@ggiinnaa

I wish you the best. Please keep us posted. It helps me a lot knowing there are others. I never smoked and letting friends know I had lung cancer was difficult. Thank you

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Typical carcinoids and DIPNECH are not associated with smoking. The majority of cases are non-smokers and for those that smoked it’s unrelated. Terrible that we feel we need to defend ourselves from judgement. My brother had the most common type of lung cancer (NSCLC) and never smoked a day in his life, never drank, always exercised. He was fit and healthy. Died at 48. Same with my colleague who died at 50. Even for those who did get some type of cancer from smoking, heart disease from poor health habits, etc., we shouldn’t think they deserve it. We’ve all made some bad choices along the way. Mine is catering to my sweet tooth.

Luckily for us, typical carcinoids and DIPNECH are both very, very slow growing and treatable. We may outlive our doctors!

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sadragliz | @sadragliz | Apr 24 11:26am
In reply to @californiazebra "@sadragliz Welcome to the DIPNECH club. Are you being followed by a NETs team?" + (show)
@californiazebra

@sadragliz
Welcome to the DIPNECH club. Are you being followed by a NETs team?

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No I am not. My pathology after my lung surgery was sent to Mayo, and that is how I got my results for NET and DIPNECH. No sure if there are NET Teams in Illinois.

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