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Public Support Group 515 total results
Discussions (41)
Procedures?
Was diagnosed with NET last year, have been getting Lanreotide injections every 28 days plus Everolimus medication everyday Dr stopped Everolimus in September because i...
stage 1A Net removed from upper left lobe
I had a stage 1 nodule removed from left lobe now have a new 7mm in lower lobe 3 months after surgery and they said...
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...
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...
What does the future look like for a stage 4 NET patient?
This is my story....A lobectomy of upper right lobe of the lung in 2016 It returned in 2023 with a tumor in a lymph node...
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...
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...
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...
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...
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...
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...
Anyone have a small pancreatic IPMN cyst that turned out to be cancer?
Have CT scans every 6 months to monitor both recurrent breast cancer and neuroendocrine lung cancer. CT showed 7 mm cyst that looks like side...
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...
Recurrence with Metastasis
Hi, I was dx with pancreatic nets in 2010, had a resection in my pancreas. There were some nodules left. I had octreotide for carcinoid...
Has anyone had experience with a Liver Transplant that has NET cancer?
Has anyone had experience with a Liver Transplant that has Neuroendocrine NET? My wife after chemo, surgery, PRRT, etc was suggested my our medical team...
What questions should I ask oncologist tumor types and chemo treatment
77 yrs old, no symptoms, diagnosis not clear. NET found in LL lung and lymph nodes in upper LL. Dotatate G scan no involvement in...
First Lanreotide Injection: Any tips about diet and side effects?
Good morning, I am an 81 yr old female & was diagnosed with stage 4 NETS in my liver metastasized from my lung in Dec...
Where can I find a carcinoid syndrome specialist in Florida?!
Recently I had a positive 5-HIAA urine test and a 64 CU Dotatate PET scan that lit up parts of duodenum and found a 4mm...
Possible NET with No Evidence of Tumor: Mediastinal Mass
Hello All! I have had flushing for several years with alcohol, stress, emotions, heat/exercise, and some other foods. I also have cyclical diarrhea. In the...
NETs, Toilet Paper, a rant and a little humor
NET, the TP crisis, a rant and a little humorI’m sure the irony of the TP “shortage” is not lost on most of us. As...
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