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 was diagnosed last year with a lung tumor and had my left lower lobe of my lung removed. I was diagnosed with a carcinoid tumor and DIPNEC. About 6 months ago I started having symptoms again including flushing, blood sugar issues, thyroid problems and issues with my blood pressure. I kept being told all my labs were normal, blah blah blah. I just had a repeat Lung CT. I now have 2 small tumors in 2 separate right lung lobes. I'm told that they couldn't possibly be causing my symptoms. I asked for a referral to a University Hospital semi near where I live (5 hours away) which he finally agreed to.

Has anyone else experienced problems getting a proper diagnosis? I feel so frustrated. And any questions that I should be asking when I finally see an "expert"?

Thank you in advance < 3

@spaztwob: Hi! I’m a NET patient too and have a suggestion.
The Gallium (or Copper) Dotatate PET scan has had best report of tumor involvement for me.
A NET Medical Oncoligy Specialist is the person who will have best scans & treatment that can lead to best tumor resolution (see Cancer Facilities, University Medical Facilities - ask for Neuroendocrine Specialists; oncoligists, endocrinologists, surgeons, etc)!
We NET patients are “special” and must be proactive in our healthcare and treatment options.
Ask your questions here and you will get honest, caring guidance from Mayo Connect NET peers who want to help. Best health to you…

Where do you live? You want to be at a teaching hospital if possible. Like Mayo, Stanford or whichever is closest to you. It’s shocking how many doctors don’t know a thing about neuroendocrine tumors or even how our metabolism works. I e it’s not just food in equals weight gain. For most it’s determined by our genes!

Hello @spaztwobe and welcome to the NETs support group. I see that @dbamos1945 and @tstern7 have already replied to you with suggestions and encouragement. You are wise to be looking for answers about this new diagnosis of DIPNECH. On Connect there are several members with DIPNECH including @californiazebra, @pattirushing and @jhhaas.

Here are links to a Connect discussions on this topic. I would encourage you to read the posts in these discussions and feel free to post questions.
---Diagnosed with DIPHECN Yesterday
https://connect.mayoclinic.org/discussion/diagnosed-with-dipnech-yesterday/
---DIPNECH DIAGNOSIS: Has anyone had radiation?
https://connect.mayoclinic.org/discussion/dipnech-diagnosis-has-anyone-had-radiation/
---I am 75 and have carcinoid tumors in lungs
https://connect.mayoclinic.org/discussion/i-am-75-and-have-carcinoid-tumors-net-in-lungs/
It is important to obtain at least one consultation with a NET specialist in order to receive a correct diagnosis and development of a treatment plan. If you are near one of the three Mayo Clinic facilities, this would be a great place for a consultation as there are NET specialists in each of the Mayo campuses. Here is a link with appointment information, http://mayocl.in/1mtmR63.

If an appointment at Mayo Clinic is not possible, it would be good to be seen at a university medical school near you. Have the tumors in the lung been biopsied yet?

@spaztwobe
I feel your frustration. It took 12 years to correctly diagnose my lung NETs and DIPNECH after 50+ nodules were seen on my CT scan. Lots of wrong guesses. I wouldn’t agree to an open biopsy so we waited until they could do a needle biopsy. It actually took 30 years to diagnose me from the time chronic coughing, mucus and shortness of breath started. I’ve been taking octreotide injections for 4 years now and it has been life changing to control my respiratory symptoms. I am being treated by a NETs team at a teaching hospital. My local doctors were not familiar with it all especially DIPNECH. I hope your NETs team meets your needs.

Oh, I do get flushing on one side of my face all the time as well as itching on the front of my neck.