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Discussions (216)
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...
PRRT for stage 4 pNET: Tips for managing complete hair loss?
After going through many years of misery & countless investigative scans, I was finally diagnosed with Stage 4 pNETs on 4 July 2023: I had...
Differentiating Carcinoid syndrome from MCAS?
Hi UK based where mcas is poorly understood I have been diagnoses with autoimmune gastritis in the last few weeks Symptoms over the last few...
New To NETS - Stage 4 / Grade 1
Hello, my fellow NETS friends, My name is Eileen. I am 42 years old and incidentally discovered I have Stage 4/Grade 1 NETS when I...
Interested in hearing people's experiences with PRRT
Sorry if this has been discussed before, but I was interested in hearing peoples experience with PRRT (Peptide Receptor Radionuclide Therapy)? I live in Georgia...
Worried about carcinoid syndrome
Hi guys, I'm very sorry for those ofyou dealing with NETs. Well, I've been in the habit of drinking a few drinks or so nightly...
So, now just still waiting, losing my mind being worried and new quest
Number 1......I have realized my stool has been kind of chunky and yellowish for a couple months.......so I read that can be from stress alone,...
So many questions about wjether or not I have Carcinoid Cancer/NETS?
Hello all. My Info. (Retired 2022. ECMO Specialist Perfusion/Registered Respiratory Therapist and 35 years in Critical healthcare)Severe Asthma(environmental) my whole life. Never smoked. A glass...
Carcinoid tumor of the appendix.PET scan results
Hi everyone i was diagnosed w a carcinoid tumor of the appendx. It was removed 8 m again along w my rt colon. Fast forward...
Diagnosed with NET si-NET Stage 1 Grade 1
I went on 1/3 for my first preventative colonoscopy. I was scared to death as I am a worry wort lol. Colonoscopy went fine only...
Neuroendocrine Lanreotide (Advanz Pharma) Problems
So, I'm writing this on behalf of my mom. She was first diagnosed with pancreatic neuroendocrine cancer in Sept/2019, because of the extent of the...
New Diagnosis: husband's labs are all indicating NET
My husband's labs are all indicating NET. His Chromogranin levels are 2474 and repeated is 1944. PET Scan did not light up. Next week is...
Who has had Distal Pancreatectomy and regretted it?
I am seeking input about experiences with losing the tail of the pancreas and spleen. Has this been the right choice for you? I will...
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...
Could a mass on adrenal gland be linked to my carcinoid lung tumor?
I am 75. Had right upper lung lobe removed in August 2022Have multiple 5 cm carcinoid tumorettes in lungCould a mass on my adrenal gland...
How rare is it???
I have stomach nets, sibo (small intestinal bacterial overgrowth), Autoimmune Atrophic gastritis and Stomach nets. I’m currently on the wait and watch protocol for the...
Tincture of Opium for bowel issues with diarrhea
I have been able to get by day to day with my presciption for Tincture of Opium (Paragoric). This is the miracle drug, I have...
Mother might have neuroendocrine tumors, is being told she has IBS
Maybe this is rant post, but my mom aged 56 has been having diarrhoea and flushing since past 7 months and I've seen three gastroenterologists,...
Cost of treatment
I am currently living in Panama, without insurance and have been diagnosed with NETS, biopsied and they believe its origin is the small intestine ....
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...
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