1. < Neuroendocrine Tumors (NETs)

Straight to the liver: Anyone have NETs originating in strange areas?

Posted by osiejay26 @osiejay26, Jan 31, 2023

I was diagnosed with NETs in 2021. My case was deemed unusual since it's only on the liver. According to my oncologist and from what I've read, it usually originates in the pancreas, lungs, digestive track etc. It only gets to the liver when it has spread or metastasized. In my case is appears to have originated from the liver and so they automatically categorized it as stage 4. Anyone else have tumors that have originated in strange areas?

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 31, 2023

Hello @osiejay26 and welcome to the NET discussion group on Mayo Connect. I can understand that you are concerned about finding any other NET that may exist. What has your current medical team done to investigate the possibility of other NETs. For example, has your doctor done a 68Ga DOTATATE Positron Emission Tomography (PET)? This type of scan is the best way to find other NETs that may exist. Here is a link to information on this scan,
--68GA DOTATATE Positron emission tomography,
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/.

What treatment is currently being discussed for the liver NET? Is liver debulking a possibility? Has chemotherapy been suggested?

REPLY
osiejay26 | @osiejay26 | Jan 31, 2023

Hi Teresa, We did a PET scan within the first month of discovering the tumors. It revealed that they were contained to my liver and nowhere else. I have CT and MRI scans every three months to monitor my tumors and see if there any additional tumors. So far none have been found. I'm receiving an injection of Lanreotide every four weeks. When I first started the treatment my flushing decreased and my CgA levels decreased as well. Now my flushing has returned with a vengeance so has my CgA levels regardless of treatment.
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 1, 2023
In reply to @osiejay26 "Hi Teresa, We did a PET scan within the first month of discovering the tumors. It..." + (show)
@osiejay26

Hi Teresa, We did a PET scan within the first month of discovering the tumors. It revealed that they were contained to my liver and nowhere else. I have CT and MRI scans every three months to monitor my tumors and see if there any additional tumors. So far none have been found. I'm receiving an injection of Lanreotide every four weeks. When I first started the treatment my flushing decreased and my CgA levels decreased as well. Now my flushing has returned with a vengeance so has my CgA levels regardless of treatment.

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@osiejay26
That must be discouraging to have the symptoms return after being controlled. What is your doctor saying about this change?

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1 reply
osiejay26 | @osiejay26 | Feb 1, 2023
In reply to @hopeful33250 "@osiejay26 That must be discouraging to have the symptoms return after being controlled. What is your..." + (show)
@hopeful33250

@osiejay26
That must be discouraging to have the symptoms return after being controlled. What is your doctor saying about this change?

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She said that it could be how far apart the treatments have been? My last scan was in September before the elevated levels. She ordered scans for this month to see if there are any changes.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 2, 2023
In reply to @osiejay26 "She said that it could be how far apart the treatments have been? My last scan..." + (show)
@osiejay26

She said that it could be how far apart the treatments have been? My last scan was in September before the elevated levels. She ordered scans for this month to see if there are any changes.

Jump to this post

@osiejay26

I'm glad to hear that your doctor is following up as a result of the increased symptoms. I hope to hear from you again.

Will you post with any questions and after your follow up scans?

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dbamos1945 | @dbamos1945 | Feb 2, 2023

@osiejay26… I hope you have received results of your recent scans. Since I have NET with Met to Liver I am following your case closely… always trying to understand better how “our cancer” reacts to the monthly shot. You have my best thoughts with you while you absorb this information. Let me know how you are doing! Bette (Hermit in Hemet)

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