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Neuroendocrine Tumors (NETs) Support Group

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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
Discussion
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 8:23pm
Discussion
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
Discussion
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
Discussion
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
Discussion
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
Discussion
DIPNECH diagnosis. Has anyone had radiation?
Right middle lobectomy in Nov '24 at Mayo Scottsdale. 3 carcinoids removed were all malignant and 1 lymph node involved out of 23 taken. DIPNECH...
Last active: Mar 5 7:07pm
Discussion
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
Discussion
Large Appendiceal NET, well-differentiated
Does anyone have long term experience with larger appendix tumors? Especially women in relation to gynecological issues? My appendix tumor was well-differentiated and slow growing...
Last active: Apr 20, 2024
Discussion
Anyone have Prophylactic Cranial Irradiation (PCI) for SCLC NETs?
I have cancer f unknown primary. Tumour in neck lymph node with histology type Neuroendocrine with suspected primary SCLC based on pathology of neck tumour.Had...
Last active: Apr 15 12:57pm