1. < Neuroendocrine Tumors (NETs)

Diagnosis Frustrated: How you were diagnosed with NETs?

Posted by pokeymama @pokeymama, Mar 23 4:55pm

Can you tell me how you were diagnosed? I have had several G68 pet scans, (nothing lighting up intensely), multiple endoscopy and they cannot find the tumor that is causing my problems (high CgA, high gastrin, severe carcinoid syndrome, stomach lining covered with neuroendocrine cells, etc) Until they can ‘find’ a tumor and biopsy it my only treatment is Octreotide every month. My GI doc says he knows I have nets but cannot find them! I’m so frustrated with being so sick and no diagnosis. Thank you for your time, I hope to find a solution soon
Renee

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dbamos1945 | @dbamos1945 | Mar 23 6:53pm

@pokeymama: a 24hour urine test is beneficial in NET diagnosis.
Gallium or Copper Dotatate PET scan is a gold standard test. Contrast Evoist MRI best visualizes NET size in Liver. These tests result if given at a cancer hospital with NET specialists and radiologists familiar with NET tumors successfully. You are not guaranteed a diagnosis but I believe that it is the best option. Some NET patients have never found their Primary Tumor, but this fact has not delayed their successful treatment.
You are not alone in not finding the tumor to biopsy - NET tumors can be very illusive. Mine was found surprisingly by Gastroenterologist performing a Endoscopy and saw a bit of something behind the Duodenum. A biopsy was taken & diagnosis made… then was sent for 2nd opinion with results of NET (carcinoid tumor disease). The Pathologist provided needed Grade, Stage, as well as staining slide to provide other valuable data to determine best treatment decisions. You deserve answers, but you need the best NET specialists on your case. Now is the time to do whatever you have to do to get the best care money can buy!
I would learn everything about your type of cancer and stay informed by asking questions from many NET organizations you will find online. If you ask for help - you will be offered peer experiences, treatment details and information that will help you make medical decisions. Be persistent until you get the info you want. No question is unheeded.
Best to you… Bette (dbamos1945)

REPLY
1 reply
jessie59 | @jessie59 | Mar 24 6:13am

Hi Renee, I am also in the same frustrating situation as have gone for CT scan, 2 rounds of MRI with contrast in Liver & Pelvis, ultrasounds in liver, PET GA68 DOTATATE scan, 2 rounds of endoscopy, 2 rounds of blood tests with high Gastrin (sent to Mayo clinic), both surgeon & oncologist believed my Gastrinoma PNET has recur but couldn’t locate/find.

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pokeymama | @pokeymama | Mar 24 9:58am

Where does that leave us?
Regarding the suggestion to go to a specialist… I have read that the Net centers won’t see you without a positive diagnosis? If not true I will travel the earth to get some answers. My symptoms are debilitating. I have the worst quality of life!

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nevinrbaskin | @nevinrbaskin | Mar 24 12:00pm
In reply to @dbamos1945 "@pokeymama: a 24hour urine test is beneficial in NET diagnosis. Gallium or Copper Dotatate PET scan..." + (show)
@dbamos1945

@pokeymama: a 24hour urine test is beneficial in NET diagnosis.
Gallium or Copper Dotatate PET scan is a gold standard test. Contrast Evoist MRI best visualizes NET size in Liver. These tests result if given at a cancer hospital with NET specialists and radiologists familiar with NET tumors successfully. You are not guaranteed a diagnosis but I believe that it is the best option. Some NET patients have never found their Primary Tumor, but this fact has not delayed their successful treatment.
You are not alone in not finding the tumor to biopsy - NET tumors can be very illusive. Mine was found surprisingly by Gastroenterologist performing a Endoscopy and saw a bit of something behind the Duodenum. A biopsy was taken & diagnosis made… then was sent for 2nd opinion with results of NET (carcinoid tumor disease). The Pathologist provided needed Grade, Stage, as well as staining slide to provide other valuable data to determine best treatment decisions. You deserve answers, but you need the best NET specialists on your case. Now is the time to do whatever you have to do to get the best care money can buy!
I would learn everything about your type of cancer and stay informed by asking questions from many NET organizations you will find online. If you ask for help - you will be offered peer experiences, treatment details and information that will help you make medical decisions. Be persistent until you get the info you want. No question is unheeded.
Best to you… Bette (dbamos1945)

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i had six second opinions until I found the right one… never give up !

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sophiarose | @sophiarose | Mar 25 11:21am

I was diagnosed 5 years ago
Have multiple surgeries procedures and treatments done
My primary had yet to be found and according to my doctor it probably never will
I am currently on Octreotide
I found that what I eat effects my onset of side effects
Sugar causes sweating
Caffeine cause irregular heart beats
Dairy, fried foods, spicy foods and some fruits cause severe diarrhea
It took awhile but I have a list of do’s and don’ts
Good luck

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