I am 75 and have carcinoid tumors NET in lungs

Posted by ggiinnaa @ggiinnaa, Apr 18, 2025

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.

Profile picture for nannybb @nannybb

@bijou17 I had a lower lobe wedge which was taken along with 5 lymph nodes. It was benign from the biopsy and still small, but was growing. My problem is having it by robot caused muscle and nerve damage. I have had two nerve blocks to find the nerve bundle that is causing the pain. The last procedure captured about 50%. I assumed they would then do an ablation. That was the end goal so I can return to work. I received a letter yesterday that the request was denied, and I am going to have to pay for the last nerve block out of pocket. I pay about $500 per month for the best United Healthcare has to offer. I've paid into it for 10 years out of pocket. The letter stated Medicare was the one refusing and demanding payment. I'm at my wits end.

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@nannybb
I hope that your physician appealed this decision.
I am sorry that you have to cope with all this stress.
I had this unfortunate experience too

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Profile picture for haelsky @haelsky

@nannybb
I hope that your physician appealed this decision.
I am sorry that you have to cope with all this stress.
I had this unfortunate experience too

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@haelsky Can you share more of your experience? I'd love to know, if you are willing. I have been advised to get legal aid. I'm so dang tired. And thank you for your response. I hate for anyone to go through what I have, but at lease I now know I'm not an anomaly.

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Profile picture for nannybb @nannybb

@haelsky Can you share more of your experience? I'd love to know, if you are willing. I have been advised to get legal aid. I'm so dang tired. And thank you for your response. I hate for anyone to go through what I have, but at lease I now know I'm not an anomaly.

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@nannybb
I know if a doctor calls and speaks to another doctor
denial is rescinded.
You will have to ask for the name of the insurance doctor who does appeals ; this will enable your doctor to speak doctor to doctor!

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Profile picture for haelsky @haelsky

@nannybb
I know if a doctor calls and speaks to another doctor
denial is rescinded.
You will have to ask for the name of the insurance doctor who does appeals ; this will enable your doctor to speak doctor to doctor!

Jump to this post

@haelsky Thank you so much. The doctor called this morning and admitted it was their fault and said she would take care of it. There ARE still some great doctors walking on planet earth. 💕

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