Diagnosing small bowel NETs with carcinoid syndrome

Lots of information about these tests on the internet. My surgeons and Oncologist go straight to the PET scan though. As to your specific questions, I have same diagnosis, but never had those specific tests. I do believe CT/PET is the best test for "seeing NETs" in small intestine. Good luck.

I had a dototate scan. A regular ct scan couldn’t see it in my small intestine. I can see why you’d be concerned about the barium.

Thanks for the information. Hope you don't mind a few follow up questions. Did your primary care doc or a specialist (GI or Oncologist) diagnose you? So your diagnosis was made with a PET scan, or a CT/PET?

Erin. Thanks for telling me about Dotatate. It's the first I've heard of it. It sounds like what I need. Just have a few questions. Was dotatate used for a CT, PET, or CT/PET combination scan? This was how they made your initial diagnosis? What type of doctor diagnosed you? I'm seeing a primary care (who had to do a NETs web search to discuss it), and a gastroenterologist (more knowledgable, but seems to have ordered the wrong test). The oncology practice I spoke with said your primary care diagnoses NETs, and then gives a referral to an oncologist? Wondering if this is common. Hopefully this won't be TMI. I have classic carcinoid symptoms: flushing, feel awful, GI issues, fainted last week. Had never in my life fainted. So must be in my liver too. In sum, eager to figure this out.

I had a positive Cologard test which led to a colonoscopy. The NET was found on the colonoscopy. The gastrointestinal doctor ordered a ct scan and oncology and surgery consultation. The surgeon ordered the dototate scan which is a pet scan. A ct scan is always done at the beginning of the pet scan. The net wasn’t seen on the ct scan.

I am sorry you are feeling awful. While I didn’t have carcinoid symptoms, I felt terrible from a small amount of obstruction. I felt bloated and no appetite. When I ate, I got nauseous.

You asked, "Did your primary care doc or a specialist (GI or Oncologist) diagnose you? So your diagnosis was made with a PET scan, or a CT/PET?"

No, I went hunting for my eating/digesting problems visiting an Gastroenterologist near me. He had a CT done, saw a mass, referred me to a Surgical Oncologist that ordered a PET scan. That scan indicated NETS, but I still needed to have it under a microscope for insurance to cover my cancer treatment. Finally had a very good Radiologist do a needle biopsy through my back to a lymph node near the main tumor where NETs cells were found. As you might could imagine this all took quite a while.

Hello, I think the best screening test is the dotatate PET.

They discovered it with that technique in my wife's case, the rest of the CT scans and MRIs showed nothing.

In our case, the endocrinologist requested the PET scan.

Thank you. Most people here have said the same about CT's. It sounds like it isn't sensitive enough a lot of the time. Today I asked my internist for a PET. His answer was, that he doesn't order them. He said oncologists do, but I'd need a cancer diagnoses to see an oncologist. So we go around and around. Anyway, thanks again.

I had the dotonate PET Scan after CAT, MRI, liver biopsy. I also had primary partial blockage in SI for months before having emergency surgery. Removed 10in SI, 8 lymph nodes, GB, 2.5cm NET. You need to get an NET specialist oncologist ASAP. About 60% of patients it has matasisized before they find it. A good specialist will suggest the right treatment course and insurance solutions. You insurance may dictate your treatment so you need someone that can navigate this for you. I was diagnosed Jan 2023 after months of all of the above symptoms. I'm now 57 feeling good and living a normal life on once a month Lanreotide injections. 🙏💚

Uhh, I'm very sorry that you weren't authorized, it seems that the procedures are different in different countries.

And finally, I had a question: How would you get a cancer diagnosis if it hasn't been detected? That's why I understand that PET scans should be authorized. It doesn't make sense not to authorize the study, or it doesn't make sense for health reasons, but for economic reasons, of course.

I wish you the best of luck.