NETest from WREN Labs

Posted by megansims @megansims, Nov 15, 2019

Has anyone had the NETest performed from WREN laboratory? My Oncologist at Mayo recommended it but the research seems pretty sparse about it.

My wife submitted 4 tests to WREN labs during their initial roll out. They paid for the test. We shared this with her Mayo Oncologist. The numbers for the test varied widely and I didn't find it valuable and while her Oncologist was interested in the methodology, he didn't rely on it even as an element for her care plan. This was a couple of years ago, so things may have changed.

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@megansims did you decide to get the NETest?
Here is a 2018 study that may interest you. Note that some of study authors work or worked for WREN labs.
The NETest: The Clinical Utility of Multigene Blood Analysis in the Diagnosis and Management of Neuroendocrine Tumors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6716518/

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@colleenyoung

@megansims did you decide to get the NETest?
Here is a 2018 study that may interest you. Note that some of study authors work or worked for WREN labs.
The NETest: The Clinical Utility of Multigene Blood Analysis in the Diagnosis and Management of Neuroendocrine Tumors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6716518/

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@colleenyoung – I did get the test done, two of them actually. The first was 60% and the second result was 67% which the lab listed as indicative of slow growing NET disease, but the Medical Director and the Mayo Oncologist also stated it was not diagnositc on its own, so then, what was the point? More anxiety, less answers!

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@megansims

@colleenyoung – I did get the test done, two of them actually. The first was 60% and the second result was 67% which the lab listed as indicative of slow growing NET disease, but the Medical Director and the Mayo Oncologist also stated it was not diagnositc on its own, so then, what was the point? More anxiety, less answers!

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@megansims, I can understand your frustration. Often multiple different tests are required to confirm a diagnosis. What further testing has been ordered?

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@colleenyoung

@megansims, I can understand your frustration. Often multiple different tests are required to confirm a diagnosis. What further testing has been ordered?

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I will be getting a Gallium 68 PET MRI in the Spring, along with repeat labs, basic labs as well as some NET biomarkers.

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Hello @megansims,

The Gallium 68 PET MRI sounds like a good plan.

Will you post again and update as to how you are feeling and the results of the new tests?

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@gtassithomas

I anyone getting care or has anyone been diagnosed with a neuroendocrine tumor at Mayo and has anyone had the NET test (blood test) from WREN LABS?

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We’ve been treated at Mayo for neuroendocrine tumor for five years. During that. My wife had three net tests from WREN while they were developing their product. The results of the net test were inconsistent. Our oncologist at Mayo thought the net test was interesting, but I don’t believe he put a great deal of faith in it.

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@tomewilson

We’ve been treated at Mayo for neuroendocrine tumor for five years. During that. My wife had three net tests from WREN while they were developing their product. The results of the net test were inconsistent. Our oncologist at Mayo thought the net test was interesting, but I don’t believe he put a great deal of faith in it.

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I appreciate your sharing your thoughts/opinions, @tomewilson.

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@gtassithomas

I anyone getting care or has anyone been diagnosed with a neuroendocrine tumor at Mayo and has anyone had the NET test (blood test) from WREN LABS?

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Could you tell me how long ago that was??

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I anyone getting care or has anyone been diagnosed with a neuroendocrine tumor at Mayo and has anyone had the NET test (blood test) from WREN LABS?

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@gtassithomas

Could you tell me how long ago that was??

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Three tests were done – Sept 2015, April 2016 and Oct 2016. The Sept 2015 showed a low probability of NETs (this was followed by open abdominal surgery to rescect ileum and liver. The April 2016 showed a 'high, 80% probability) and my wife was NED at that time.
The third in Oct 2016 showed a 26.7% probability and was followed in Dec 2016 with open abdominal surgery in Dec 2016. Dr. Haldanarson's office notes were – She has had three NETests done. The study done on September 28, 2015, was 26.7, which falls into the low-risk range; the study April 15, 2016, was 80%, or in the high-risk range; and lastly, it was done on October 14, 2016, and it was down to 26.7. I do not know if the NETest is reliable in her situation given the high suspicion for recurrent tumor in the setting of a low-risk result.

Dr. Kidd at WREN labs called her case 'interesting'. He requested and we sent them my wifes labs and surgical report.

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@gtassithomas

I anyone getting care or has anyone been diagnosed with a neuroendocrine tumor at Mayo and has anyone had the NET test (blood test) from WREN LABS?

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Hi @gtassithomas, you'll notice that I moved your message to an existing discussion where @megansims asked similar questions about the NET test. Click VIEW & REPLY to read through past responses as well as today's replies by the ever-helpful @tomewilson

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@tomewilson

Three tests were done – Sept 2015, April 2016 and Oct 2016. The Sept 2015 showed a low probability of NETs (this was followed by open abdominal surgery to rescect ileum and liver. The April 2016 showed a 'high, 80% probability) and my wife was NED at that time.
The third in Oct 2016 showed a 26.7% probability and was followed in Dec 2016 with open abdominal surgery in Dec 2016. Dr. Haldanarson's office notes were – She has had three NETests done. The study done on September 28, 2015, was 26.7, which falls into the low-risk range; the study April 15, 2016, was 80%, or in the high-risk range; and lastly, it was done on October 14, 2016, and it was down to 26.7. I do not know if the NETest is reliable in her situation given the high suspicion for recurrent tumor in the setting of a low-risk result.

Dr. Kidd at WREN labs called her case 'interesting'. He requested and we sent them my wifes labs and surgical report.

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Thank you for that info.

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@megansims

I will be getting a Gallium 68 PET MRI in the Spring, along with repeat labs, basic labs as well as some NET biomarkers.

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Hello @megansims

When you last posted, you were going to be having some additional NET testing. Did you have those tests? I hope that you got some information that would be helpful. How are you feeling?

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Teresa, Thanks for checking in. I just actually had the NETest repeated and am waiting for the result. I have been on quite the roller coaster rise, which is still continuing. I am scheduled to come back to Mayo at the end of October for more testing and to meet with a thoracic surgeon. THe doctors are still uncertain about my mediastinal mass and had been certain that it was an old scar formation from an old histoplasmosis infection. On further exam, the mass is quite vascular, though, which is more indicative of a NET than an old infection. We will see. It would be nice to have some answers after such a long, long time.

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