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Public Support Group 2,580 total results
Discussions (216)
NEC & Mixed Tumor Second Option Program available at Mayo
My husband is under 40, and a recent scan showed that his cancer has progressed to his liver after having his colon removed last year...
Neuroendocrine of pancreas
My sister has Grade 3 pancreatic neuroendocrine tumor with liver nodules. She was initially treated with CapTem, but it didn’t work, so the doctor switched...
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...
Well differentiated Neuroendocrine Grade 2 in rectum
Hi there, I was recently diagnosed with a Neuroendocrine tumor in my rectum. After a rectal biopsy and correlating morphology and Immunohistochemistry, the diagnosis was...
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...
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...
Keep Fighting
My wife and I visited with one of my doctors on my Mayo care team yesterday. We reviewed my recent tests. The CAPTEM chemo is...
Newly Diagnosed Pancreatic NET awaiting Distal Pancrectomy
Hello, recently diagnosed with Pancreatic NETS. Unsure of type other FNA which listed grade 1 and KI67 @ .97%. Scheduled for body and Distal surgery...
Has anyone had the peritoneal stripping surgery?
I was diagnosed with a small bowel obstruction (SBO) in 2022 that turned out to be Stage 2 NETS. Had surgery & did fine until...
Did anyone else have a long struggle to getting a NETs diagnosis?
After being tested for one year at my local hospital gastro department, I was finally sent to the UK MARKEY Cancer Center in Lexington Ky...
Merkel Cell Carcinoma: Immunotherapy while on antirejection meds
I was diagnosed with MCC and had surgery and followed with 30 treatment of radiation on the right side of my head, cheek and neck.The...
Interested in your experience with treatments of PRRT vs surgery
I am grade 2 metastatic to the liver of unknown origin. diagnosed in Oct 2024. Dr suspects it originated in the GI Track. Octreotide has...
Recently Diagnosed with Duodenal Neuroendocrine Tumor Grade 1
Hello everyone, looking for some help and information. I have recently diagnosed with duodenal neuroendocrine tumor Grade 1 as per Endoscopy biopsy report. After that...
New PNET Question Re: Surgery (I'm in bit of a pickle)
Hello, I’m 90 days post-diagnosis with a G1 (non-functional) pancreatic malignant neuroendocrine tumor (PNET) on my pancreas, measuring 1.3 cm (CT scan on 4/23 showed...
Statistics on progression free survival while on SSA / Lanreotide
I have had a full whipple in March 2019. In March 2023 I was diagnosed with neuroendocrine liver metastases (NELM), Grade 2. Since June 23...
Reccurrenct NETs and side effects of cap/tem
I have reoccurrence of two tumors, one in liver and one near small intestine, site of previous surgery. I’m currently in third round of cap/temo....
Diagnosed with Stage 4 pNET: What should I know?
It turns out that my husband has actually had this since at least 2014 when he had most of his pancreas removed as well as...
Carcinoid Cancer and working
Hi my name is Audra and I was diagnosed with Carcinoid Cancer in 2016. I drove myself to the ER with severe pain and had...
Ankle swelling with pain while on Everolimus for PNET
Started Everolimus for pancreatic Neuroendocrine cancer with Mets to liver and bone diagnosed four years ago. Was 49 when diagnosed. Had TACEx4, IV radiation(PRRT) x4,...
PNET on tail of pancreas with numerous bilobar hepatic metastases
After eight years (yes, eight years/ ten doctors) of chasing ULQ abdominal and back pain, I recently received a diagnosis of an ill-defined, well differentiated,...
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