Diagnosis Frustrated: How you were diagnosed with NETs?

@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)

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.

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!

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

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

I too have not found my primary tumor. Excruciatingly Symptomatic. Significant weight loss. High to very high gastrin and Chromagramin A, positive H-IAA, gastric uptake on gallium, but no hot spot, clean endoscopy except for ulcers. The frustration and second guessing in my head make me so upset. I'm on otreotide every three weeks and take three injections of fast acting otrotide every day. It helps with a lot, but symptoms still break through. The burning pain, the utterly mind bending nausea are ruining my daily life.

I just want someone to hear me.

To tell me I am not a fraud.

@rose2525: I feel your frustration! NETS primary tumors tend to be illusive and difficult to discover. In my case the primary suspicious tumor was playing “peek-a-boo” with my Gastro doc during an exploratory endoscopy to reveal a cause of my symptoms (At the jeouno-duodenum small intestine). In reflection the Gastro doc asked me if I would agree to a repeat endoscopy to “take another look at this area” - he was able to get a biopsy of this suspicious illusive area; therefore Pathologist diagnosed Carcinoid Cancer & further verified by 2nd Pathology opinion! Unfortunately, upon further investigation metastases found in the liver.
Question: Can you get a Gallium 68 PET Scan? It should reveal any Samanostatin-receptive areas of NET tumors; perhaps this will lead to a verified NET biopsy (or maybe even a surgical removal). It is good that your Oncologist has prescribed the 28 day shots that can reduce symptoms and might control tumors. You have the required lab test results… just need a biopsy to reveal the Grade, Stage & Stain Results plus perhaps further specific scans that will help determine best treatment!
Have you consulted with a Neuroendocrine Medical Oncologist? They will provide your best advice on treatments and guidance determining your decisions with the help of a Tumor Board recommendations. They can be found researching “Cancer Hospitals/University Medical Centers”. We are so fortunate when we find a NET specialist (Oncologist, Surgeon, Radiologist, Nuclear Medical Professionals). NET cancer is a rare speciality, but NET cancer is different than other cancers and each NET patient reacts differently. We need a specialist!
I believe this is NET patients most important decision! No matter that we have to travel to get the care we NEED! Best of health to you. Bette

I'm so sorry you have to go through this. As others have mentioned seeing a net specialist is very important especially considering the difficulty in locating the tumor. Mayo has specialists at all three of their locations. You can find a list of nationwide specialists at:
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/
Best of luck to you! I hope you find answers!

@rose2522
Did they biopsy your ulcers on endoscopy?? That was my primary

@rose2522
The frustration and second guessing is difficult. My husband's 1st tumor was found in 1995 between the illieum and bowell. 28 years later (2022), he was rediagnosed as Stage 4 with tumors throughout his body. I would echo the previous comments about being sure that you see a NETS specialist. We go to Rochester Mayo and have been very satisfied with his care. He has a lanriotide injection every 28 days with minimal side effects and leads a normal life. However, the mind games can be tough! We have also been happy to use Connect. It confirms that everyone with NETS walks an individual journey! Good luck to you!