What tests show that you have NETs?

@packneb Hi and Welcome to Mayo Connect. There are a series of tests that paint the overall picture of a NETs diagnosis. Everyone's picture can be somewhat different, because our bodies don't react to the disease, testing methods, and treatment, the same way. For me, the two tests that confirmed the diagnosis were biopsies of my tumors and a PET scan with gallium-68 dotatate contrast. It seems that you had a negative dotatate scan correct? Do you know the specific dotatate that was used? I don't know what a WREN test is. Can you tell me what it is or where I can read about it? Thanks.

Hello @packneb,

I would like to join @tomrennie in welcoming you to the NETs support group. When I was diagnosed with NETs, it was also confirmed by a biopsy of a lesion in the upper digestive tract.

We do have some discussions on Connect that cover WREN. Here are links to those discussions;
- NETest from WREN Labs
https://connect.mayoclinic.org/discussion/netest-from-wren-labs/
See all mentions of WREN using the group search: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

In addition to the questions @tomrennie asked, I am wondering what symptoms you were experiencing that led your medical team to consider a NETs diagnosis?

Unfortunately, as far as I know, the only way to get an accurate NETs diagnosis is under a microscope. A course of treatment will often times be mostly determined from the findings of that biopsy. Your oncologist might handle well differentiated slow growing NETS with a Lanreotide montly injection. If its poorly differentiated, fast growing type then maybe a more aggressive chemotherapy. PET scans can certainly help support the diagnosis.

CT & pet scans

I have had both, plus liver biopsy. Definitely in liver. Had recent Pet scan which should show where else. The waiting and not knowing is the worse for me now.

@sandy080954: You have lots of company trying not to worry regarding scan results of our NET tumors and how this will change future! Scanxiety is the term formulated for this painful time.
My hope is that you will get word today that all is stable… I hope it helps that we are all thinking positive future for you! We care.

Hello @sandy080954, and welcome to the NETs support group on Mayo Connect. I'm glad you found this forum where you can meet others who have also experienced this diagnosis, with all its ups and downs. I see that you have already met @dbamos1945, who has extensive experience with NETs.

Is this a new diagnosis for you? What symptoms led to the discovery of NETs?

@dbamos1945 I feel I’ve been anxious for months now. It’s with mixed feelings I’m awaiting more information.

@hopeful33250 excessive diarrhea and bloating. My family doctor never seemed to take this seriously. I made appointment with my gastroenterologist and he did upper and colonoscopy, biopsies came back negative. I also had my yearly low-dose lung cancer screening which led to Pet scan showing activity in lung, colon and liver. So far liver biopsy determined NET. Will know more soon about lung.

I am sorry to hear that you are dealing with so many unknown health issues, @sandy080954. I hope you have some answers soon so you can deal with treatments and know what to expect.

Will you keep posting with your questions and updates?