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

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?

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.

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

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.

@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?

@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)

Interested in how you have done with your treatment? I have a similar diagnosis. Thanks for sharingi

So your NET started in your liver too? That is rare. Was it therefore stage 4 as well? What tests led you NET specialist oncologist to conclude this rare diagnosis? Thanks.

My initial biopsy said metastatic neuroendocrine carcinoma. Indicating stage 4 and the origin being somewhere else. My oncologist did not agree. Not sure what on the report made her come to a different conclusion. Biopsy redone by another pathologist and reviewed by another pathologist. New reading well differentiated neuroendocrine tumor grade 2. They did not list a stage. New reading has KI-67 6-8%. Initial reading said 3%. Probably hepatic recurrence was listed. I an having the special pet scan next week to see if any other areas of the body light up. So will know more when those results come back.

I have no symptoms. I had breast cancer in 2015. I have access to a second opinion from Mayo Clinic as my hospital is in a network where I assume they pay a fee to Mayo. No charge to the patient. So biopsy will be read again at that time. The mass in the liver was 4.3.1 and there was a small low density lesion noted in the other lobe. Assume they will light up if neuroendocrine cancer in that lesion.

Where are you getting your treatment? I am considering second opinions with MD Anderson in person and Mayo Clinic with paper 2nd opinion. Do you have any experience with them? Thanks.