1. < Neuroendocrine Tumors (NETs)

Diagnosing small bowel NETs with carcinoid syndrome

Posted by blueskies10 @blueskies10, Mar 11 6:13pm

I have 2 questions about diagnostic tests. 1. Is oral barium contrast safe with a suspected or possible partial small intestinal obstruction? I'm concerned the barium will solidify in the narrowed segment, and cause a complete obstruction. 2. Which test is best to diagnose small intestinal NETs with carcinoid syndrome: Abdominopelvic CT, or Small Intestinal Contrast Imaging Fluoroscopy. Two doctors disagree about the best test for diagnosis. Both tests call for oral barium. Note: I am having a 24-hour 5-HIAA urine test too. Any help appreciated.

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stevestenberg31 | @stevestenberg31 | Mar 13 9:01pm

Sorry I misunderstood. I thought you were already diagnosed with SINET. That 5HIAA urine test will provide strong clues. The PETScan is the last image you get if indeed the other test lead you there. I wish you the best. 🙏💚

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panorman3 | @panorman3 | Mar 14 5:22am

I have a carcinoid tumor in the Centrist part of my body and it is inoperable by my surgeon.
If you have such a tumor please tell me what you are doing.
Mine is growing real slow and I have not done anything will check in June of this year to see if it is still growing slowly. Do not know if left alone will it masstify.
People are commenting but are talking about treating other than carcinoid tumors.
If you suggest certain treatments and throw out the treatment, define what the medicine is going to do. They have suggested a shot once a month and I see people getting a shot once a month with different medications.
I need clarification and I am confused with people talking about their cancer. Thanks
GOD bless

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1 reply
ricki8 | @ricki8 | Mar 16 9:44am
In reply to @blueskies10 "Thank you. Most people here have said the same about CT's. It sounds like it isn't..." + (show)
@blueskies10

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.

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This can be so frustrating. Without symptoms, but an instinct, I chose to pay for an MRI in March of 2023 (Canada only covers if symptoms found, for this test), and discovered a Stage 4 to liver cancer. I was told I had 2 weeks to live - oh fun! Everything kicked into action. After the usual PET scans, biopsy, I was given Lanreotide and now have frequent CT Scans (with contrast dye). It shows everything that's needed. I have one of the top Oncologists in Canada and I brought her the info. on Histotripsy (that she was unaware of). I had a very large (out of pocket) expense to have the procedure done in Seattle. It helped. Shrunk some and eradicated one tumor.
Bottom line: Everything changes, we change. Stay on top of this and communicate with an Oncologist.

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nevinrbaskin | @nevinrbaskin | Mar 16 9:48am
In reply to @blueskies10 "Erin. Thanks for telling me about Dotatate. It's the first I've heard of it. It sounds..." + (show)
@blueskies10

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.

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i had a more effective dotatate ps with copper… supposedly much more telling than regular dotatate…

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blueskies10 | @blueskies10 | Mar 17 9:10am
In reply to @stevestenberg31 "I had the dotonate PET Scan after CAT, MRI, liver biopsy. I also had primary partial..." + (show)
@stevestenberg31

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. 🙏💚

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Thanks! A normal life! That's great! Your CT was negative with tumors in SI causing a partial blockage? Did you have a 24-hour 5-HIAA urine test? Or maybe that's just useful for liver metastasis.

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2 replies
phyllisden | @phyllisden | Mar 17 9:48pm
In reply to @panorman3 "I have a carcinoid tumor in the Centrist part of my body and it is inoperable..." + (show)
@panorman3

I have a carcinoid tumor in the Centrist part of my body and it is inoperable by my surgeon.
If you have such a tumor please tell me what you are doing.
Mine is growing real slow and I have not done anything will check in June of this year to see if it is still growing slowly. Do not know if left alone will it masstify.
People are commenting but are talking about treating other than carcinoid tumors.
If you suggest certain treatments and throw out the treatment, define what the medicine is going to do. They have suggested a shot once a month and I see people getting a shot once a month with different medications.
I need clarification and I am confused with people talking about their cancer. Thanks
GOD bless

Jump to this post

@panorman3 , I, too, have an inoperable tumor. It’s in my stomach and was found 7 years ago when I had a blockage in my small intestine - and I lost 10” of that intestine.
I immediately went on Octreotide injections monthly.
Then in 2020 a PET/CT revealed that some of the tumors scattered throughout my body were becoming more active and starting to grow a bit. But due to the pandemic I had to wait a year to go to Mayo for Lutathera treatment. From 2021 on, I’ve continued the monthly injections. But last year I started getting sicker and we found through a scan that they were growing. So last week I started another round of Lutathera treatments.
Bottom line - do your research, find an oncologist that works with Neuroendocrine/carcinoid tumors, and yes, get treatment as yes, the tumor (s) will progress and possible metastasize to other areas of your body.

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stevestenberg31 | @stevestenberg31 | Mar 18 4:25pm
In reply to @blueskies10 "Thanks! A normal life! That's great! Your CT was negative with tumors in SI causing a..." + (show)
@blueskies10

Thanks! A normal life! That's great! Your CT was negative with tumors in SI causing a partial blockage? Did you have a 24-hour 5-HIAA urine test? Or maybe that's just useful for liver metastasis.

Jump to this post

Yes I had all those test including 5-H1AA urine test. A liver biopsy determined it was a NET for sure. The dotonate PETScan shows the radiologist where all the NETs are. Remember in about 60% of cases it's already spread by the time you find one. Its important to get a NET Specialist /oncologist because they will help determine treatment and insurance. I don't think insurance will cover surgery before Lanreotide. I said "normal life" b/c my day to day is pretty normal but... I'll have MRI every three months for the rest of my life and eventually cancer grows.🙏

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1 reply
stevestenberg31 | @stevestenberg31 | Mar 18 4:29pm
In reply to @blueskies10 "Thanks! A normal life! That's great! Your CT was negative with tumors in SI causing a..." + (show)
@blueskies10

Thanks! A normal life! That's great! Your CT was negative with tumors in SI causing a partial blockage? Did you have a 24-hour 5-HIAA urine test? Or maybe that's just useful for liver metastasis.

Jump to this post

"The Cancer Code" is a good book for general knowledge on cancer

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blueskies10 | @blueskies10 | Mar 19 5:46pm
In reply to @stevestenberg31 "Yes I had all those test including 5-H1AA urine test. A liver biopsy determined it was..." + (show)
@stevestenberg31

Yes I had all those test including 5-H1AA urine test. A liver biopsy determined it was a NET for sure. The dotonate PETScan shows the radiologist where all the NETs are. Remember in about 60% of cases it's already spread by the time you find one. Its important to get a NET Specialist /oncologist because they will help determine treatment and insurance. I don't think insurance will cover surgery before Lanreotide. I said "normal life" b/c my day to day is pretty normal but... I'll have MRI every three months for the rest of my life and eventually cancer grows.🙏

Jump to this post

Steve. I'm sorry. I thought that in your case it was caught in time. That excision meant cure. Thank you for your help. If you don't mind, I have 2 last questions. First, my 5-HIAA, done by Labcorp, was negative. Wondering about it's reliability? Quest's website says they require preservative & refrigeration. Labcorp had no preservative, no refrigeration. Last, and I hope this question isn't too much to ask. If you were me, undiagnosed, a year of carcinoid symptoms (weight loss, flushing, GI), do you think you'd travel to a NET specialist at a major medical center for diagnosis? Or is a NET Specialists for after diagnosis; for treatment.

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