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Neuroendocrine Tumors (NETs) Support Group

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Discussions (41)
Lung Nets and pain in arm pit
At the moment, I have only one lung net in my right lung. The last two days I have been having severe discomfort in my...
Last active: Jun 2, 2024
Anyone with lung NETs experienced significant weight loss?
Has anyone with a lung neuroendocrine tumor experienced significant weight loss?I lost 30+ lbs during the year leading up to my diagnosis of a low-grade...
Last active: Jun 8 11:18am
Anyone have lung NETs lining your pleura?
My brother has recently been diagnosed with NETs of the lung. They are lining the right side pleura, and one on the carinal lymph node....
Last active: Jul 24, 2025
Questions I should ask before surgery for Lung NETs?
I’m scheduled for a zoom call with a nurse Jan 8 in preparation for robotic surgery of a 13mm typical neuroendocrine carcinoid. I prefer to...
Support Group: Lung Cancer
Last active: Jan 2, 2024
Flushing with NETS lung cancer?
My understanding was that flushing only happened with those who have GI NETS. However, I have developed something very weird in the last 8 months...
Last active: May 22, 2024
Sarcoidosis and Lung NET, upcoming surgery
Way back in 2007 I was diagnosed with sarcoidosis in my lungs. At that time they mentioned a nodule of 8 mm in my left...
Last active: Jul 19, 2024
Lung NET with COPD: What treatment options are there?
62 y old female, had slow growing lung nodule watched over 10+ years. Diagnosed with asthma and later COPD due to chronic cough during the...
Last active: Jun 11 9:10am
Describe your recovery from lung NET surgery
77, female, diagnosed withNET carcinoid tumors in LLlung and left lymph nodes. No other organs lighting up on scans, of which there were many. No...
Last active: Jul 5 6:59am
NET lung with Liver Metastasis (stage 4)
@tufan and anyone else who can be helpful please My wife has been diagnosed with NET Lung and liver metastasis (stage 4) early December 2022....
Last active: Apr 20, 2024
A couple of questions
One, I'm curious about NETs pain. Do they themselves cause pain or only when they are pressing on or blocking other things? I have lung...
Last active: Jul 27, 2025
Atypical Lung NET treated with radiation: What was your outcome?
Has anyone had this LNET treated with Radiation and what was your outcome?
Last active: Mar 26, 2025
I am 75 and have carcinoid tumors NET in lungs
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...
Last active: Jun 15 2:19pm
Previous heart surgery & risks of surgery to remove lung net
I had a triple bypass 6 years ago and at that time they discovered lung nodule. It has been followed with CT scans & slowly...
Last active: Mar 16 8:37am
NET (Lung + liver metastatis) Radical nephrectomy done for RCC
I would like to know if there is another one with same case as mine - 2 primary tumor. 1) NET lung 2) RCC recently...
Support Group: Kidney Cancer
Last active: Jan 9, 2023
Recently diagnosed with a NET in my middle lobe of my right lung.
It has been a frustrating process with the dr office handling my case. Fighting to get approval for a NET Spot Scan. I’ve been having...
Last active: Aug 1, 2025
DO I need 2 teams if I have both Nets-lung and DIPNECH?
I have been diagnosed with both NETs-Lung and DIPNECH. Do I need two teams to be involved since I have two different conditions or one...
Last active: Oct 17, 2025
My journey to here...
Hi, my name is Anita. I found out I had lung NETs in March this year. I was sent for a CT scan to check...
Last active: Jul 25, 2025
Carcinoid NET changed to carcinoma: What's the difference?
Lungs Nets biopsy typical Neuroendocrine carcinoid tumours., in 2023. Oncologist refers to them now Neuroendocrine carcinoma tumors!!!! Does she have to biopsy them again for...
Last active: Feb 13, 2025
NET Lobectomy
I had a typcial stage 1 NET. I had a lobectomy. I started having chills 6 weeks post op. Antibiotics helped. I have fluid around...
Last active: Jun 19, 2025
Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma
Just diagnosed with High-Grade Neuroendocrine Lung Carcinoma in the right lower lobe. My oncologist is recommending surgery. Anyone have a history of surgery with NETs?
Last active: Aug 2, 2023