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Neuroendocrine Tumors (NETs) Support Group

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Discussions (29)
Cromogranina A
Hola buenas tardes. Mi nombre es Gustavo. Soy de Buenos Aires , Argentina. A mí esposa le extirparon un tumor neuroendocrino secretor de ACTH, lo...
Last active: Mar 19, 2025
My CHROMOGRANIN A test
My CHROMOGRANIN A test shows a reading 0f 1971 what does this mean. I completed throat cancer 3 months ago and was informed it is...
Last active: Aug 14, 2024
Chromogranin A test via Quest: symptoms of NETs
I'm 5'8", age 62 years. I now weigh 133 lbs, 25 lbs lost since last Spring. I self-ordered a group of cancer marker tests, all...
Last active: May 27, 2023
CGA (Chromogranin) results from different labs
Does anyone know how much CGA results can vary from lab to lab. Following are the last four CGA results for my wife: 75 (11/16...
Last active: Jan 20, 2018
High or Fluctuating Chromogranin A Level: What does it mean?
I’m not sure if I’m in the right place or not but I started this conversation here bc my Levels were so high. Has anyone...
Last active: Jan 17 11:10am
My Chromogranin numbers are high. What is a more accurate test?
I had stage 4 neuroendocrine cancer 3 years ago. They removed 55 % of my liver to remove 3 tumors and 17 inches of my...
Last active: Sep 14, 2024
What is a normal range for Chromogranin A test? Mine was 99 in 2021.
I had my first Chromogranin A blood test in 2021. 2 months after I had the lower lobe of my left lung removed due to...
Last active: Jul 15, 2024
Anyone have experience with "functioning" Pancreatic NETs?
I was recently diagnosed with PNETS saw an oncologist and had a second opinion through University of Kansas. Through that session I learned my tumors...
Last active: Mar 30, 2024
Someone can help?
Hello, I am a 38-year-old male. For the past 5 years, I have been suffering from chronic stomach problems, including chronic gastritis and Helicobacter pylori...
Last active: Feb 6 11:47am
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...
Last active: Mar 31, 2025
Lanreotide Manufacturers: anyone have experience with either?
Lanreotide Manufacturers Approved products are manufactured by Ipsen and Cipla - does anyone have experiences when the the two products are used in ones' NET...
Last active: Mar 18, 2023
Neuroendocrine Tumor - no treatment plan method
Newly diagnosed with à neuroendocrine tumor Gr1 K167 under 1%. Was removed during a colonoscopy as it presented as a polyp, but the pathology report...
Last active: 4 days ago
High grade 3, muscle invasive neuroendocrine bladder cancer
High grade neuroendocrine carcinoma (small cell carcinoma) of the bladder.The tumour cells express CK (weakly), Synaptophysin, Chromogranin and TTF-1.They are immunonegative for GATA-3 and p63.The...
Support Group: Bladder Cancer
Last active: Nov 23, 2024
I am not ok with this at all
Hi, I’m 48 years old. I’ve been seeing doctors for years because of profound fatigue, headaches, trouble swallowing and on and on. Basically have been...
Last active: Nov 30, 2023
PNET removed 2 years ago: Can it come back at another site?
Hi ..i did distal pancréatectomy with splectomy since 2 years..it was Pnet grade 2 ..last year my MRI was clean..now since 2 week minimum i...
Last active: Aug 5, 2025
Anyone diagnosed with NET, Grade II of the esophagus/stomach?
I recently had a routine EGD and a polyp/tumor was removed and the pathology report stated a diagnosis of "well-differentiated neuroendocrine tumor, Grade II". My...
Last active: May 31, 2024
Appendiceal Neuroendocrine Tumor: any experiences to share?
My 15 year old daughter had a 0.8cm appendiceal tumor in the distal end(mesoappendix and subserosal involvement) removed in July 2023. Since then she has...
Last active: Dec 18, 2023
Still have symptoms after surgery
Hi, my name is Mikhail, im from Moscow, Russia. I have had NET of small incestine, surgery in july, 2023. G1, ki67-2%, pT1NOMO. Need to...
Last active: Dec 29, 2024
Possible NET
I am a bit concerned and not sure if I am overreacting, but my GI doctor wants me to have a NetSpot scan done. I...
Last active: Jun 8, 2024
Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide
I was diagnosed late February 2025 by liver lesion biopsy with neuroendocrine grade 2, well differentiated. Ga68 Dotatate Pet scan end of March confirmed pancreas...
Last active: Sep 16, 2025