Support Groups

Neuroendocrine Tumors (NETs) Support Group

Public Support Group
296 total results
Discussions (28)
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
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: May 15, 2024
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: May 4, 2024
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
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
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
NETS tumor in the plural sac around left lung
Hi, I was diagnosed with NETS last May. Since I have had open heart surgery to replace the two valves on the right side of...
Last active: Apr 2, 2018
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
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: Jun 27, 2023
followup testing after lung carcinoid
I am wondering what followup testing is done after surgery for lung carcinoids. Also is there a NET specialist in Philadelphia? thanks Faith Martin
Last active: Aug 20, 2017
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
Life expectancy with NETs and lifetyle as it progresses
What is my life expectancy as a result of my NET? Diagnosed 3 years ago with Grade 1, Stage 4 NETs. Primary tumor is probably...
Last active: Jun 1, 2023
Seeings your NETs tumors on Scans
I was wondering if anyone has been shown their tumors on any scans? Mine are lung and lymph nodes.
Last active: Nov 30, 2019
Straight to the liver: Anyone have NETs originating in strange areas?
I was diagnosed with NETs in 2021. My case was deemed unusual since it's only on the liver. According to my oncologist and from what...
Last active: Oct 4, 2024
Too good not to share
I came across a blog this morning that was “too good as not to share”. Let me preface this with the knowledge that I was...
Last active: Jan 24, 2023
How do I know somatostatin is in my system?
Good morning all. I have a question.How do I know if Somatostatin is in my system? Is it necessary for a PETSCAN Copper 64 show...
Last active: Dec 30, 2023
NIH clinical study looking for the gene causing carcinoid cancer
My nephew recently became the third family member to have a NET diagnosis - his a Merkel Cell carcinoma. My father's was carcinoid of the...
Last active: Aug 13, 2017
Neuroendocrine cells in Breast and Lungs DIPNECH
I was diagnosed with DIPNECH at National Jewish Health 3/23. Two months later, I had a lumpectomy on my breast. The pathology came back with...
Last active: Sep 16, 2024
What am I missing? Possible NET?
What am I missing? I have been feeling sick for 7 months, basically life has stopped. They have done many many testings on me and...
Last active: Jul 12, 2024