1. < Neuroendocrine Tumors (NETs)

Neuroendocrine tumor: What tests are used for diagnosis?

Posted by kellywally @kellywally, Jan 2, 2023

I had chromograinin A test done which was very high and 5-HIAA been waiting for results for over 2 weeks, I have a lot of pain 1” above my belly button, pain in back off and on, stool not normal, flushing in face, heart racing. I had ct scan and mri and only thing came back as adrenal gland left side thickening. Last year this happen to me after I had a colonoscopy but then symptoms went away and I just had another colonoscopy 8 weeks ago and my symptoms started up again. Just read that anesthesia can bring on a crisis. This year I had ct scan of lung, abdomen and pelvis, mri and they came back ok, except for adrenal gland thickening. I have all the symptoms. Is there another scan or test I should have? Please advise. Thank you

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 30, 2023
In reply to @monkey5333 "Yes I am actually not at a clinic but a hospital. They have done a CT,..." + (show)
@monkey5333

Yes I am actually not at a clinic but a hospital. They have done a CT, ULTRASOUND and my surgeon saw something on the CT that made him suspicious in my bowel. He is doing an colonoscopy and endoscopy but doesn’t think he can reach the tumor. He wants to do the scan to identify that it is a NET and any other anomalies that may exist. My pancreas was also shriveled. I came in because of a pain crisis. Any info you can share would be greatly appreciated. The pain was in my abdomen extending around to where my right kidney is located and it was excruciating.

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Hi again @monkey5333

I'm glad that you posted again with some more information. I'm so sorry to hear of the pain you are experiencing. This sounds difficult, to say the least.

As I mentioned in my earlier post, the 68Ga DOTATATE Positron Emission Tomography (PET) is the best scan to find NETs/carcinoids. You might ask your doctor where this scan is available and see if you can have this scan done.

In regard to the pain and problems you are experiencing, there is little to do but wait for the results of the colonoscopy and endoscopy and see if a biopsy can be done. Please note that there are other tests that can reveal the possibility of NETs. There are blood tests, like one that tests the Serotonin level, also a 24-hour-urine test. Here is some information on the other tests that point to the presence of NETs.
--Diagnosis and Follow-up tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
I look forward to hearing from you again. Is there a date for the colonoscopy or the endoscopy?

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1 reply
monkey5333 | @monkey5333 | Jan 30, 2023
In reply to @hopeful33250 "Hi again @monkey5333 I'm glad that you posted again with some more information. I'm so sorry..." + (show)
@hopeful33250

Hi again @monkey5333

I'm glad that you posted again with some more information. I'm so sorry to hear of the pain you are experiencing. This sounds difficult, to say the least.

As I mentioned in my earlier post, the 68Ga DOTATATE Positron Emission Tomography (PET) is the best scan to find NETs/carcinoids. You might ask your doctor where this scan is available and see if you can have this scan done.

In regard to the pain and problems you are experiencing, there is little to do but wait for the results of the colonoscopy and endoscopy and see if a biopsy can be done. Please note that there are other tests that can reveal the possibility of NETs. There are blood tests, like one that tests the Serotonin level, also a 24-hour-urine test. Here is some information on the other tests that point to the presence of NETs.
--Diagnosis and Follow-up tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
I look forward to hearing from you again. Is there a date for the colonoscopy or the endoscopy?

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Thank you for contacting me again. My pain is being controlled by medication and I have had the endoscopy/colonoscopy with another CT scan scheduled for tomorrow morning. I have had the 24 urine test. Ironically a lot of years ago after routine blood tests my doctor said that I had unomally high levels of serotonin which I believed was a good thing but he said it could come back to bite me in the future and it has.

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1 reply
osiejay26 | @osiejay26 | Jan 31, 2023
In reply to @phyllisden "Yes, there is a diagnostic test you can and should have. It's a PT CT Dototate..." + (show)
@phyllisden

Yes, there is a diagnostic test you can and should have. It's a PT CT Dototate skull to thigh scan. With this test the radiologist will inject you with a small amount of Gallium 68 Dototate. It is designed specifically to identify Carcinoid tumors that are not visible on a CT or MRI.
I went through 11 years of no definitive diagnosis until I had a blockage in 2018 in my small intestine, and they found "thousands" of carcinoid tumors that had never shown up on multiple CTs, an endoscopy, several colonoscopies. In 2020 I had the PT CT at Mayo in Phoenix and it clearly showed multiple tumors spread throughout my body.
I returned in April 2021 and went through PRRT. I'm now stable and doing well.

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Yes, the PT CT scan is the best. The only issue is sometimes insurance companies may not be willing to cover multiple tests. Mine only allowed one and trying to get another PT scan approved may require divine intervention lol.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 31, 2023
In reply to @monkey5333 "Thank you for contacting me again. My pain is being controlled by medication and I have..." + (show)
@monkey5333

Thank you for contacting me again. My pain is being controlled by medication and I have had the endoscopy/colonoscopy with another CT scan scheduled for tomorrow morning. I have had the 24 urine test. Ironically a lot of years ago after routine blood tests my doctor said that I had unomally high levels of serotonin which I believed was a good thing but he said it could come back to bite me in the future and it has.

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Hello @monkey5333,

I'm glad that you let me know about the upcoming endoscopy/colonoscopy and CT scan. The elevated serotonin levels can be an indication of NETs so it is good that you are getting a thorough check-up.

I hope that your doctor is able to get a biopsy and find out what the problem might be. Will you post again after your endoscopy/colonoscopy (and of course post with any questions you might have in the meantime)?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 31, 2023
In reply to @dianamontsno "Hi what imaging test is given to check for NETS?" + (show)
@dianamontsno

Hi what imaging test is given to check for NETS?

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Welcome, @dianamontsno. There are different tests used in the diagnosis of NETs. I moved your message to this existing discussion:
- Neuroendocrine tumor: What tests are used for diagnosis? https://connect.mayoclinic.org/discussion/neuroendocrin-tumor/

I did this so you can read the helpful posts and connect easily with members like @hopeful33250 @phyllisden @monkey5333 @skkirby @osiejay26 @kellywally and many others.

Since you also asked specifically about imaging, you may also be interested in this related discussion:
- 68Ga DOTATATE Positron Emission Tomography (PET) Now at Mayo Clinic https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/

Diana, are you currently in the diagnostic stage of NETs? What tests have you had done so far?

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Sherry | @skkirby | Feb 3, 2023

Hi there-

I initially had pancreatitis. Because of that, my physician ordered a variety of lab work and CT scans.
After they noticed my tumor from the CT scan, I had a PET scan, biopsy and (FNA)- fine needle aspiration performed at Mayo. Because my tumor was initially small in size (<1 cm) and deemed as stable, the physician's decided to take a wait and see approach and I was monitored very closely from 2014 - 2020 with repeat biopsies and FNAs every six months. In early 2020, I wasn't feeling so well and when I went back for my next FNA/biopsy it came back as malignant. My surgery was January 4, 2021 at Mayo Rochester. I have been very, very satisfied with my experiences at Mayo. (In July 2000, I had lung cancer surgery at Mayo Rochester for a baseball size mass on my right lung and a baseball sized mass behind my heart). Glad to help answer your questions. If you have additional questions, please feel free to reach out.
Warmest Regards,
Sherry

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 4, 2023
In reply to @skkirby "Hi there- I initially had pancreatitis. Because of that, my physician ordered a variety of lab..." + (show)
@skkirby

Hi there-

I initially had pancreatitis. Because of that, my physician ordered a variety of lab work and CT scans.
After they noticed my tumor from the CT scan, I had a PET scan, biopsy and (FNA)- fine needle aspiration performed at Mayo. Because my tumor was initially small in size (<1 cm) and deemed as stable, the physician's decided to take a wait and see approach and I was monitored very closely from 2014 - 2020 with repeat biopsies and FNAs every six months. In early 2020, I wasn't feeling so well and when I went back for my next FNA/biopsy it came back as malignant. My surgery was January 4, 2021 at Mayo Rochester. I have been very, very satisfied with my experiences at Mayo. (In July 2000, I had lung cancer surgery at Mayo Rochester for a baseball size mass on my right lung and a baseball sized mass behind my heart). Glad to help answer your questions. If you have additional questions, please feel free to reach out.
Warmest Regards,
Sherry

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@skkirby
Hello Sherry,

Sharing your experience here on Mayo Connect is encouraging for many who are anticipating treatment for NETs. I'm glad that you posted this good report of your experience with surgery at Mayo.

I see that you mentioned a mass on your lung. Was this a carcinoid tumor? I'm also wondering what type of follow up you will be having for the pancreatic NET?

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dbamos1945 | @dbamos1945 | Feb 17, 2023

Dianamontsno your question is relative. It depends on your symptoms. I’m no MD, but will share with you my experience. NETS primary tumors often found in small intestine; mine found during exploratory endoscopy by Gastroenterologist when he took specimens to biopsy. Some dr’s need report of carcinoid biopsy by pathologist to make diagnosis and determine treatment.
I’m sorry you are on this journey, but knowledge is power… keep asking questions!
Best to you.

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